December 2, 2004
The Stephen Decatur House
1610 H Street, NW
Washington, DC 20006
COUNCIL MEMBERS PRESENT
Leon R. Kass, M.D., Ph.D., Chairman
American Enterprise Institute
Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School
Francis Fukuyama, Ph.D.
Johns Hopkins University
Michael S. Gazzaniga, Ph.D.
P. George, D.Phil., J.D.
Ann Glendon, J.D., L.LM.
William B. Hurlbut, M.D.
Charles Krauthammer, M.D.
Peter A. Lawler, Ph.D.
Johns Hopkins University School of Medicine
Gilbert C. Meilaender,
Diana J. Schaub, Ph.D.
Q. Wilson, Ph.D.
University of California, Los Angeles
WELCOME AND ANNNOUNCEMENTS
CHAIRMAN KASS: Good morning. Welcome to this, the 19th
meeting of the President's Council on Bioethics.
I would like to recognize the presence of Yuval Levin, who
is the designated federal officer, in whose presence this is a
Before coming to the program, I, with some sadness, have to
announce that Dick Roblin, who is our Scientific Director, will be
stepping down from that position at the end of this calendar year, a
position that he has filled with consummate skill, grace, and devotion
for the three years of the Council's existence.
When I was first appointed to this position, Dick, who was
an old friend of now over 40 years from our graduate student days,
expressed a willingness to interrupt his career plans for a year and to
give me and us one year of service as the Scientific Director. That
one year has grown to three, involving heroic commuting, two daily
90-minute commutes from Frederick, and he has given all of us, and me
in particular, the benefit of his extraordinary probity and judgment,
his dependable penchant for care and precision, and his insistence that
all of our work conform to the highest standards of scientific and
other sorts of reasoning and evidence. All parts of our reports, but
especially the scientific parts, have benefitted immensely from his
knowledge and critical acumen.
The only saving note of this is, I'm happy to add, that Dick
has agreed to continue as a senior consultant on scientific matters
to the staff, cutting down to a day or so a week.
Dick, all of us on the Council applaud your work and are
deeply grateful for your outstanding service.
This meeting is devoted to three subjects of ongoing
interest to the Council: ethical and social issues of an aging
society, the regulation of the uses of biotechnology, and, with a novel
twist, embryonic stem cell research. The topics will come in that
Members will recognize these remarks from the
Chairman's letter, but I would like to put them on the record.
After the last meeting in discussions with members of the Council, we
identified at least three pieces of this aging and dementia topic that
were ripe for possible Council reporting and recommendations.
First of all, an overview of the looming "crisis"
in long-term care, to be presented in humanistic as well as medical and
Second, an evaluation and critique of the growing reliance
on advance directives as the primary means of dealing with critical
decisions in the care of people incapable of making their own
And, third, a consideration of possible substantive ethical
guidelines for deciding how vigorously to intervene medically in
patients with advanced dementia.
These topics grow out of things that we have heard here beginning in
SESSION 1: AFTER THE LIFE CYCLE:
THE MORAL CHALLENGES OF LATER LIFE
CHAIRMAN KASS: In this first session, we will
be returning to a theme that was introduced to us in the June meeting
by Thomas Cole, whom we welcome back to the Council. Since we last
saw him, Professor Cole has been appointed Professor and Director
of the McGovern Center for Health, Humanities, and the Human Spirit
at the University of Texas-Houston School of Medicine.
In June, Professor Cole presented a paper, "What Does It
Mean to Grow Old?", richly illustrated with iconographic illustrations
that illuminated the absence, in our time, of a clear cultural script
for the meaning of old age, precisely at a time when most of us
can expect to enjoy a fair stretch of it.
He raised for us really one of the very most fundamental questions,
rarely asked and rarely discussed, which is to say, what is old
age to be like in the New World? Such questions — though
they don't immediately lend themselves to specific policy recommendations,
consideration of these questions, it seems to us, is crucial to
thinking soundly and wisely about public policy.
As a result of conversations we had after that meeting, we have
commissioned Professor Cole to develop further the ideas that emerged
in the June discussion, and we look forward to hearing his presentation,
giving us an overview of a paper, which you have at your place,
newly arrived (at least an early draft of this paper), "After
the Life Cycle: The Moral Challenges of Later Life".
Before letting Professor Cole begin, I would also like to
welcome Professor Carl Schneider, who is the Chauncey Stillman
Professor of Ethics, Morality, and the Practice of Law at the Law
School of the University of Michigan. He will present in the second
Welcome to both of you. It's nice to have you here.
Professor Cole, the floor is yours.
DR. COLE: I very much appreciate the chance to return
and to really, in particular, respond to a question that Bill Hurlbut
asked at dinner when itwas too late to be coherent. Basically,
he asked, how should we be thinking about the moral and spiritual
sources of inspiration in later life? Here is an attempt, a first
attempt, to think about that with you.
Here's just a quick overview of what I'll be
covering. After my introduction, I'm going to talk very briefly
about the normativity of the life cycle. I do this with some
hesitation, knowing that people here have written elegantly about the
normal and the natural and the moral.
Then I'll talk briefly about the modernization of the
life cycle, basically, showing how we don't really have a life
cycle anymore in our culture; what we have is a life course. We really
have a life course, not a life cycle.
Then I'll begin to get into the meat of what I've tried to think
about, which are, what are the moral challenges that older people
face, both people who are healthy and relatively physically intact,
and those who are frail and unable to really carry out the activities
of daily living?
In almost 30 years of reading and writing about later life, my
favorite book is still a very slender volume by the Catholic theologian
Henri Nouwen and a co-author named Walter Gaffney. It's entitled,
"Aging: A Fulfillment of Life," written in 1974. Like
many books on aging written in the seventies and eighties, Nouwen
really goes after negative stereotypes and attitudes toward older
people. He's trying to offer us images and ideals that emphasize
solidarity, based on our shared humanity in the universal process
of growing older.
The book's central motif if a large wagon-wheel leaning
against a birch tree in the white snow, beautifully photographed. The
photo invites us each to think of ourselves as a spoke on the great
wheel of life, part of the ongoing cycle of generations. It implies
that each of us has our own life cycle to traverse, a moving up and a
going down, a moving forward, yet somehow also coming back to the
beginning in relationship to generations before us and after us.
It resembles the Christ-centered circular life cycle from
the medieval period which I showed last time that I was here. But
while medieval Christians considered earthly time as a mere shadow of
eternity, the late 20th century Catholic theologian asserts that we
have only one cycle to live and that living it is the source of our
Well, modern western culture, since the Reformation, has
placed great emphasis on the affirmation of everyday life, on relief of
suffering, and on the respect and dignity and rights of individuals.
So, as a modern, therefore, Nouwen sets the issue of a good life
squarely in the province of everyday living. He leans heavily on
Erikson's work, which I will come to, and he writes that our
greatest vocation is to live carefully and gracefully. Aging then
becomes the gradual fulfillment of the life cycle in which receiving
matures in giving and living makes dying worthwhile.
With elegant simplicity, he describes a three-stage life
cycle as it cogwheels with previous and future generations. The
restful accomplishment of the old wheel tells us the story of life.
Entering into the world, we are what we are given, and for many years
thereafter, parents and grandparents, brothers and sisters, friends and
lovers keep giving to us, some more, some less, some hesitantly, some
generously. When we can finally stand on our own feet, speak our own
words, and express our own unique self in work and in love, we realize
how much is given to us.
But while reaching the height of our cycle and saying, with
a great sense of confidence, "I really am," we sense that to
fulfill our life, we are now called to become parents and grandparents,
brothers and sisters, teachers, friends, and lovers ourselves and to
give to others, so that when we leave this world, we can be what we
Now I must say I love the lyrical beauty of this passage
and, in particular, its view that an individual's personal
development naturally entails self-transcendence and moral
responsibility in later life. As he puts it, "receiving matures
But contemporary American culture seems to emphasize
individual development without a clear consensus or even a rich debate
about the meanings of later life and the responsibilities of older
people to future generations. With the rise of mass longevity and the
ever-lengthening life expectancy, the roles, responsibilities, virtues,
vices, and meanings of an extended life take on urgent meanings in both
public and private life.
Strangely, there is almost nothing written on this topic.
There's a plethora of literature which focuses appropriately on the
ethics of caregiving, on private and public responsibilities to older
people, on the rights of older people, but there is virtually no
discussion of the reciprocal responsibilities of older people.
In the bioethics literature, older people or their proxies
are viewed solely as bearers of rights, as individuals entitled to make
their own choices regarding health care, but there is precious little
work on the content of those choices or on the larger issues of
accountability, responsibility, virtue, and vice in later life.
So let me contextualize this issue with a brief interpretation of Nouwen
and of Erikson, on whom he really basically relies, focusing on
the normative dimension of their views of aging and the life cycle.
Then I'll offer an historical argument that we are living after
the life cycle, both normatively and structurally. Finally, I'll
provide a tentative sketch of the moral challenges of later life
for both healthy older people and those who are frail and sick.
Let me begin with a brief analysis of Nouwen's
perspective and that of his more famous counterpart, Erik Erikson.
Philosophically, Nouwen's view rests on an ancient doctrine shared
by Greeks, Romans, and Christians alike, that the human lifespan
contains a single order, it's a natural order, and that each stage
possesses its own characteristics and moral norms. "Life's
race course is fixed," wrote Cicero in De Senectute. "Nature
has only a single path, and that path is run but once, and to each
stage of existence has been allotted its appropriate quality."
With the rise of Christianity, this normative life cycle is folded into
a divinely-ordained natural order, and the stoic ideal of rational
self-mastery is replaced with a journey to salvation. Nouwen writes
as a Catholic. His view of the life cycle is couched mostly in
secular psychological terms which echo Erikson's famous psychoanalytical
formulation in the "Eight Ages of Man," each with its
own cycle/social conflict and corresponding virtue.
First formulated in the mid-twentieth century,
Erikson's version of the life cycle virtually dominated American
academic thought and public imagination for over 25 years. I think
Erikson's theory is actually a restatement of the stoic ideal,
supplemented by evolutionary and psychoanalytic theories.
Like the Stoics, Erikson argued that the cycle of life
contained its own stages, each with their own moral norms and
struggles. He saw virtues as not as lofty ideals formulated by
theologians and moralists, but rather as essential qualities rooted in
human evolution. As he put it, "Man's psychosocial survival
is safeguarded only by vital virtues which develop in the interplay of
successive and overlapping generations living together in organized
I don't want to spend too much time on Erikson. Most
people are very familiar with him. The key virtues that he emphasizes
are integrity and experience which conveys some world order and
spiritual sense, no matter how dearly paid for. It is the acceptance
of one's one and only life cycle as something that had to be and
that, by necessity, permitted no substitutions.
Wisdom, therefore, is described as detached concern with
life itself in the face of death itself. It responds to the need of
the oncoming generation for an integrated heritage and yet remains
aware of the relativity of all knowledge.
Erikson understood that the life cycle itself does not
biologically generate prescribed virtues, values, and behaviors
associated with each stage. Rather, every version of the normative
life cycle is created by forces of biology, culture, demography,
history, social structure, and patterns of family life.
Many of his followers, however, tended to treat the eight
ages of man as if it were a universal paradigm of human development.
In my view, the model that developed through Erikson and used by Nouwen
really should be understood as the culmination of the modern western
life cycle ideal first imagined in early modern Europe and then fully
realized in the middle third of the 20th century.
But the irony here is that modernization removed the
traditional structural underpinning of the normative life cycle and
replaced it with the life course. So in both modern and post-modern
society, old age emerges as an historically-unprecedented, marginal and
culturally-unstable phase of life.
So herein lies the poignancy of our situation: We are
living after the life cycle, and in this context, Erikson's
extensive life cycle writings take on an almost numinous quality. They
offer hope for an ideal of the life cycle we desperately want to
But however attractive, Erikson's ideal could not
accommodate the social, cultural, and demographic complexities of our
era. We need a richer, pluralistic dialog about how to live the
ever-lengthening years of our later life.
But, first, let me briefly sketch this historical context
of our uncertainty about roles, responsibilities, purposes, and
meanings. I'm not going to go through each of these topics in any
detail, but I basically want to make the point that the modern life
course, as opposed to the ideal of a life cycle which is lived in a
place in which generations after generations live together and cogwheel
with each other, the modern life course begins in an urban, industrial
society. The older bonds of family and status and locality are really
loosened, and individuals become increasingly encouraged to see their
lives as careers, as sequences of expected positions in school, at
work, and in retirement.
So by the third quarter of the 20th century, western
democracies had pretty much institutionalized this life course by
providing age-homogeneous schools for youthful preparation, jobs
organized according to skills, experience, and seniority for
middle-aged productivity, and publicly-funded retirement benefits for
the aged who are considered too slow, too frail, or too old-fashioned
to be productive. This is often referred to as the three boxes of
life: education for youth, work for adulthood, retirement for old
age. And old age is then roughly divided into a period of active
retirement, supported by Social Security and pensions, and a period of
frailty supported, additionally, by Medicare, Medicaid, and private
So, again, the cycle of life becomes essentially severed
from the course of life in modernity. Again, when people lived in
farms and villages, small towns, local traditions of practice and
belief and behavior provided the external norms as each generation
visibly cycled into the next, and the problem of identity did not
But, as we've seen, this is really no longer the case
in an urban, industrial, and now post-modern society. As the British
sociologist Anthony Giddens puts it, "The idea of a life cycle
makes very little sense once the connections between an individual life
and the interchanges of generations have been broken."
So, until the last quarter of the 20th century, this
institutionalized life cycle which effectively had structurally and in
some ways normatively undermined the cycle of life, it was fairly
stable. But, by the 1970s, what you found was an unraveling of this
institutionalized life course, a powerful movement by older people and
their advocates to overcome negative stereotypes of older people as
inevitably frail and dependent.
Then in the eighties we saw a rebellion against the
bureaucratized life course and against restrictive age norms. Writers
and scholars called for an age-irrelevant society that allowed more
flexibility for moving in and out of school and the workforce.
At the same time, serious doubts about the proportion of
the federal budget devoted to old people were voiced in the name of
generational equity, as were fears of an unsupportable public
obligation to sick and dependent older people. As we've seen,
political support for the welfare state began to erode.
So, finally, the problem of the transition to an
information economy has made things even more culturally and
psychologically unstable. Amidst a globalizing economy, declining
corporate commitment to long-term employment, to seniority, and defined
pension benefits, there has been a steady erosion of the expectation of
income stability in retirement.
Zygmunt Bauman characterizes the result of a speedup of
life in the Information Age and the decline of long-term stability and
benefits in the corporate life as resulting in kind of an ontological
insecurity which is especially apt for older people. He writes,
"The boundaries which tend to be simultaneously most strongly
desired and most acutely missed are those of a rightful and secure
place in society, a place where the rules do not change overnight and
without notice. It's the widespread characteristic of men and
women in our type of society that they live perpetually with the
identity problem unresolved. They suffer, one might say, from a
chronic absence of resources with which they could build a truly solid
and lasting identity, anchor it, and stop it from drifting."
So identity, then, is not merely a personal issue. It has
much broader social implications, and I believe it's crucial to the
development of wisdom and to knowing one's responsibilities.
So how are we going to think about the moral life of older
people after the life cycle? Well, even Erikson realized early on that
there's a basic problem built into sort of western ways of thinking
about the life cycle. In 1964 he wrote, "Our civilization does
not really harbor a concept of the whole of life as do the
civilizations of the east. As our world images a one-way street to
never-ending progress, interrupted only by small and big catastrophes,
our lives are to be one-way streets to success and sudden
So the absence of a culturally-viable life cycle set within
a larger frame of transcendent meaning makes it difficult for many
people to grasp possibilities of spiritual growth and moral purpose
amidst physical decline.
In his seminal work, "After Virtue", Alasdair MacIntyre
argues that we no longer possess a commonly-shared moral language
and that, in a world of moral strangers, the only alternatives are
Aristotle or Nietzsche, which means basically tradition or chaos.
So, by analogy, I think we're living after the life
cycle, after the collapse of widely-shared images and socially-cohesive
experiences of the life cycle. But I do not think that we are forced
to choose between idealized tradition on the one hand or exaggerated
chaos on the other.
First of all, the lack of a scholarly literature or
articulated norms does not imply that most older people are leading
morally-incoherent lives. And, secondly, the very search for identity
itself I think holds important moral promise.
So here I'm going to briefly just draw on the work of
Charles Taylor, who believes that, despite the moral limitations of
liberal individualism, the Biblical tradition he believes lives on as a
kind of underground moral resource in most lives, and for Taylor
selfhood or identity is inextricably bound up with some
historically-specific but often unarticulated view of the good.
So for Taylor, then, the attempt to be authentic need not
degenerate into self-indulgence and motivism or moral relativism. He
thinks that a person in search of identity always exists within a
horizon of important questions which transcend the self. Attempts at
self-definition and self-fulfillment that ignore questions and demands
outside the self suppress the very conditions of meaning and purpose.
As he writes, "Only if I exist in a world in which history or the
demands of nature or the needs of my fellow human beings or the duties
of citizenship or the call of God, or something else of this order,
crucially matters, can I define an identity for myself that is not
So my point here is that we should not view the search for identity
in old age as a narrowly-personal quest. Of course, we're all
familiar with examples of late-life Narcissism, but the effort to
live an authentic life is itself a moral ideal, an attempt to understand
and fulfill the uniqueness of each life. Older people trying to
make sense of their past and imagine their futures through various
forms of life review, spiritual autobiography, reminiscence, storytelling,
life story writing groups, and so on, these people are doing important
moral and spiritual work with genuine implications for others.
Those who are passionately involved in the arts, in public service,
and in new forms of exploration begin to exemplify models of elderhood.
As Erikson puts it at the end of "Childhood and Society",
"Without elders who possess integrity and identity, children
will be unable to trust."
So authenticity, basically, by itself is not going to be
able to provide standards of conduct and character to guide moral
development in later life. Authenticity provides no reasons to
restrain the person who authentically chooses selfishness or evil, and
it contains no intrinsic norms or prohibition.
Perhaps the dominant ideal of later life today is what the Austrian
sociologist Leopold Rosenmayr calls "Die Späte Freiheit,"
"the late freedom." Free from social obligations, retirement
for those who possess good health and adequate income is equated
with leisure activities: visiting family and friends, golf, mahjong,
bridge, travel, taking up new hobbies, attending classes at elder
hostel, institutes for learning in retirement, visiting family and
The problem here is not that these activities are wrong or
bad, but they are based on the concept of "freedom from,"
freedom from obligations that we have at midlife, with little or no
attention paid to what the freedom is for, which principles or
commitment should guide the choices being made.
Today senior marketing and advertising specialists have, I
think, the primary influence on activities, programs, and products for
seniors looking for ways to spend their free time. And maintaining
one's health is the primary goal spurred on, I think, by the
commodification of the body.
So the next real ideal after authenticity and freedom seems
to be the ideal of health, and, of course, services, products, and
programs for healthy aging are probably the most lucrative segment of
the senior market. Health is becoming increasingly construed as
physical functioning that's divorced from any reference to meaning
or human purpose. The reduction of health to physical functioning fits
hand-in-glove with the notice of freedom as unfettered choice. Let me
give you an example.
In the 1970s, the biologist Alex Comfort wrote two popular books,
The Joy of Sex and The Good Age. Comfort celebrated in both of
these books technique, functioning, achievement. Well, in the early
eighties, I invited Comfort to participate in a Conference on Aging
and Meaning, which, by the way, is the Conference where Bill May
gave his prescient paper on the virtues and vices of aging. In
a letter he wrote back to me, he bluntly declined to participate
on the grounds that he had no interest in "grannyology."
Well, this response I think reveals the obvious disdain for
older people, single-minded focus on control and functioning, and a
common but rarely articulated discomfort or contempt for existential
concerns that underlies most discussions of successful aging today.
More specifically, by linking sex with age and achievement,
Comfort anticipated the contemporary redefinition of sexual decline and
impotence — these are things which occur in individuals — into
treatable sexual dysfunctions which occur in organs; again, another way
in which medicalization has separated the images and ideals of illness
and disease from actual people.
I think one of our options here is to try to reclaim the
notion of health suggested by the AAMC. "Health is not just the
absence of disease, but it's a state of well-being that includes a
sense that life has purpose and meaning."
So, given the limitations of authenticity, of individual
freedom, and of health as adequate ideals, how should we begin to
explore the moral challenges of aging? Ronald Blythe offers this
penetrating, if harsh, starting point, which Bill May also used in his
essay. "Perhaps with full lifespans the norm, people may need to
learn how to become aged as they once learned to be adult. It may soon
be necessary and legitimate to criticize the long years of vapidity in
which a healthy elderly person does little more than eat and play bingo
or who consumes excessive amounts of drugs or who expects a
self-indulgent stupidity to go unchecked. Just as the old should be
convinced that whatever happens during senescence, they will never
suffer exclusion, so they should understand that age does not exempt
them from being despicable. To fall into purposelessness is to fall
out of real consideration."
Now that sounds harsh, but, actually, his interviews with
older English people both in the countryside and the city was
incredibly humane and wonderful. That's a wonderful book which is
not judgmental about older people.
So the point here, I think, is that learning to grow old
is, indeed, an important concern in our aging society, and it calls for
human development policies. We need job retraining, creative use of
leisure time, lifelong learnings, stimulation of volunteer networks and
self-help groups. These kinds of things help people develop the skills
and the strengths to solve their own problems.
As Harry Moody has pointed out, aging policy that responds
only to problems intensifies the depreciation of the strengths and
capacities of older people and may inadvertently increase the tendency
rather than try to prevent it. Falling into purposelessness is not
only a matter of individual will and character, but it's also a
matter of culture and public policy. Old people, like all people, they
need to be needed.
Well, in approaching the moral challenges of aging from the
point of view of the aging person, I've really always appreciated
Rabbi Hillel's ancient three questions: "If I am not for
myself, who will be for me? If I am only for myself, what am I? If
not now, when?"
I take each of these questions to stand for a phase of the
life cycle, harkening backs to Nouwen's formulation. As children
and adolescents, there's a natural tendency to see the world as
one's oyster. In midlife we realize that to mature we must attend
to the needs of others, and in later life, with time running out, we
must learn how to balance our needs against the interests and needs of
Interestingly, whereas Nouwen speaks only of giving as we
age, Hillel speaks of balancing competing needs and interests. So if
we take Hillel's questions and apply them to later life, I think we
can begin to specify key questions which demand careful and balanced
As citizens, what responsibilities do we have to our
community and the larger society, to the poor and the vulnerable, to
our communities of faith? How do we balance these against our personal
interests? What are our responsibilities to our children and
grandchildren for caregiving, for economic support? Again, how do we
balance these against our own needs and interests?
What responsibilities do we have for older parents who may
be in their eighties, nineties, or even a hundred? And, again, how do
we balance these with our own personal interests and well-being?
What responsibilities do we have to future generations to
help safeguard the environment, to work for sustainable sources of
energy? What responsibilities do we have for a spouse who is
permanently disabled perhaps by the later stages of dementia? Can we
say, as some people do, "This isn't the person I married and I
need to live my own life," or do we owe a degree of loyalty that
includes daily visits and ongoing care?
Recently, you may have seen the movie and read the book
"The Notebook" by — I'm blocking on his name. Anyway,
it's a love story in which it goes back and forth between the
present with a severely-demented wife and her husband and the past when
they first fell in love. It's based on a continuing daily visiting
which ends in somewhat sentimental but actually quite beautiful
restatement of their love.
What responsibilities do we have to shoulder, depending on
circumstances, part of the burden of our own economic support? What
responsibilities do we have for our own health, for exercising prudence
in our use of health care responsibilities? What responsibilities do
nursing home patients and residents have to assist each other? What
responsibilities do we have to pursue a path of continued growth and
spiritual development which aims at self-transcendence, compassion,
commitment to others, acceptance of physical and mental decline, and
preparation for death?
I'm not going to attempt to answer these questions. I
want to raise them. I believe they are urgent and that they call for
personal wrestling, public debate, academic inquiry, and perhaps some
kinds of public policies.
If we look, for example, carefully at advice literature
about aging over the years, we could really see a whole lot about
changing values and norms that are conveyed to a reading public of
older people. We need a great deal of social and behavioral study of
what older people think about these issues as well as how they act. We
need studies of the moral and spiritual lives of older people in
various geographic, ethnic, racial, gender, and class situations. We
need diverse religious reflections and their translation into practical
programs and congregational life. We need philosophical inquiry and
public conversation, and we need to listen carefully to the stories of
both ordinary and exemplary older people.
I don't think we can expect universally-true, decontextualized norms
and values to which all elders should be held accountable. In a
pluralist society, we need to hear from various religious, ethnic,
racial, and political groups. We need to hear, for example, from
the AARP, which some people think has actually sold out to the market
an enthusiasm of the young-old and is always perceived as a powerful
lobbying group on the part of older people.
We need new ideals. We need new models. One example is
the Spiritual Eldering Project that was initiated by Rabbi Zalman
Schacter and sponsors a series of workshops around the country for
older people who would like to become real elders in a sense of
becoming mentors, in a sense of becoming devoted increasingly to the
environment and to the communities that they live in.
There's a civic engagement project currently undertaken
in the Gerontological Society where Marc Freedman, for example, has
long been working on strengthening voluntary movements of older people,
offering their care and their skills with underprivileged urban youth.
But I think we need to step back from some of these more normative
applied ethics kinds of questions and recognize the complexity and
the nuance that's required to grapple with these moral questions.
John C. Powys' wonderful book on the art of aging ("The Art
of Growing Old") writes, "If by the time we're 60
we haven't learned what a knot of paradox and contradiction
life is, and how exquisitely the good and the bad are mingled in
every action we take, and what a compromising hostess our Lady of
Truth is, we haven't grown old to much purpose."
In other words, we need to strive for wisdom and spiritual
development to help us understand and respond to the moral challenges
of aging. As Powys points out, life is a "knot of paradox and
So what are the paradoxes and contradictions one faces on
the way to wisdom? And, of course, one is always on the way; one is
Well, one prominent paradox is that wise people know that
they don't know. They tolerate uncertainty because they understand
the limits of any attempt to grasp the entire truth, especially their
own attempts, and they understand the need for multiple points of
view. As Florida Scott Maxwell put it, "I cannot speak the truth
until I have contradicted myself."
Wise people cultivate habits of self-examination and
self-awareness. They do not attempt to impose their will on the world,
but learn to observe and accept reality as it is, and acceptance
Consider the paradox that loss is gain, failed expectations
are a precondition for acquiring experience which reflection may turn
to growth, or the paradox that, unless a person accepts her own limited
subjectivity and the way she projects herself onto the world, she will
be unable to work on transcending these things. Likewise, a person who
understands and accepts the transitory illusions of their self-image
are then able to go onto a higher level of understanding themselves.
Now these paradoxes and contradictions are not solvable
problems. They must be worked with by each individual in search of
spiritual growth, but, of course, this does not happen without guidance
and without community.
So our society, therefore, needs to support a variety of
contemplative practices, including, for example, prayer, meditation,
self-reflection, yoga, tai chi, and so on. So here we have, again, the
ancient problem of the active versus the contemplative life, another
contradiction which needs revisiting.
And one of the most important and difficult paradoxes of
aging is physical decline and spiritual growth. How can we learn to
work hard maintaining our physical health while at the same time
preparing for our own decline and death? How do we learn to hold on
and let go at the same time?
One of the central obstacles to wrestling with the
challenges of old age lies in the intractable hostility that America
has towards physical decline, decay, and dependence. Rather than
acknowledge these harsh realities, we pretend that we can master them,
and we feel like failures when we don't.
So let me turn, then, to moral and spiritual aspects of
dependency. Dependency raises a special range of challenges for older
people. There are no guidelines for how to be a good, dependent
person, and I doubt that such guidelines would be a worthwhile goal.
Hence, we must enter first into dependency's
innerworkings before we can understand its moral challenges. Imagine a
life in which you cannot walk, cannot carry out your accustomed
activities of daily living. Perhaps you're blind, demented, or
incontinent, a world in which you must wait for others to bathe you,
take you to the grocery store or to the doctor. Time stretches before
you like a desert. Shame and self-loathing lacerate for the loss of
your independence. You're tempted to both false displays of
self-sufficiency and to letting yourself go completely, lapsing into
pure passivity. Family relationships become strained, especially when
caregivers and receivers of care are dutiful playing their proper roles
without acknowledging their own and each other's emotional turmoil.
Wendy Lustbader has a lovely book called Counting on
Kindness: The Dilemmas of Dependency. She makes here an unusual point
about mercy. The old word "merci" originally meant
compassion and forbearance toward a person in one's power. In
Latin, "merces" signified payment or reward, referring to
aspects of commerce.
"Mercy," writes Lustbader, "is entirely
based on exchange. Giving help eventually embitters us unless we are
compensated at least by appreciation. Accepting help degrades us
unless we are convinced that our helpers are getting something in
As much as we might prefer to reject this stark accounting,
we discover in living through situations of dependence that goodwill is
not enough. A delicate balance exists at the heart of mercy.
Reciprocation replenishes both the spirit of the helper and the person
who is being helped.
We seem to lack language to acknowledge the difficulty of
receiving. Hence, the dependent person may feel doubly burdened,
disliking the help that cannot be repaid and feeling guilty for the
dislike. Increasing frailty shrinks opportunity to be useful,
eliminating external obligations. No one expects our presence and no
one needs our efforts.
Finding ways to be useful requires imagination and will
power; for example, among nursing home patients who often figure out
ways to help each other. Feeling useful will sometimes require special
sensitivity of the caregiver.
As a geriatric social worker and therapist, Wendy Lustbader
spent many years going to the homes of frail elders who were ashamed of
their needs and struggled to conceal them. She once visited a woman
who allowed her in because of a sudden illness. The woman's
lightbulbs had burned out. She was reading by daylight and sitting
alone in the dark. The woman refused to allow Lustbader to stand on a
stool to change her lightbulbs. Lustbader said she hated thinking of
the woman unable to sleep, tossing fitfully in her bed and unable to
At last, the woman's pride relented and Lustbader
changed the bulbs. "As I left, I thanked her for giving me the
honor of helping her." She understood what I meant, for it was
she who was carrying the burden of uselessness and I who was being
The next section that I had planned to talk about is the
section on virtues and vices. I think I will skip over most of this
because it's provided by the readings that you have from William
May and Sara Ruddick, who come at this from very different points of
But just let me say, despite an extensive literature
research in English, these are the only two articles I was able to find
on the virtues and vices of dependent older people. And I think I
would like to offer a couple of words of caution before going into this
because I think this is a very dangerous, politically and morally,
For example, friends on my left are going to argue that
I'm singling out the elderly for judgment, and friends on my right
are going to use moral arguments for responsibility of older people to
dismantle necessary state support. So I want to just sort of say
I'm in neither of those camps.
So I think any full exploration of virtues and vices must
take into account differences in culture, gender, race, ethnicity, and
social class. And contrary to Cicero's exclusive emphasis on
character, exercising virtue is not simply a matter of individual
will. Virtues occur amidst social conditions and relationships which
foster or inhibit them.
A given person's capacity for exercising virtue,
especially the more subtle and demanding virtues, also depends on her
prior level of emotional and spiritual development. For example, for
some people simply carrying out the thou shalts and the thou shalt nots
of our society may be a more reasonable expectation than expecting them
to be exemplary elders.
So, again, rather than spend time talking about these two
essays, which you can read for yourself, I'm going to move on to
what I think are the limitations of this kind of analysis and then on
to some concluding thoughts, so that there will be some time for
The one thing I want to say, however, is the importance of
humor as a virtue. Bill May touches on this in his discussion of
"hilaritas." He says, "Humor is a saving grace, allowed
by the capacity to see life's experience from a more spacious
I remember George Burns, who was performing in his
nineties, who before he got started, he said, "I want to ask for
applause in advance."
So, without trying to compare or contrast May and Ruddick
or see what they have in common, I just want to ask, what can we expect
from the analysis of character and action among the frail elderly?
And, again, these are issues for the future.
What's missing from these accounts? Can we educate
caregivers on the importance of acknowledging reciprocity and fostering
relationships which allow their patients to be useful? What would
relationships look like if moral language and the reciprocity of
dependent patients was introduced into geriatric and gerontological
education and into nursing homes or home care? How can we educate
clergy, both in the pulpit and at the bedside, in the moral challenges
Seminaries have only recently begun to provide some
gerontological education for their students, but they focus entirely on
the needs of older people. What should be added to revitalize
religious understanding of older people as moral agents?
And, finally, with the proliferation of lifelong learning
through elder hostels, institutes for learning in retirement, could
older people themselves be engaged in seminars, workshops, about the
moral issues in their lives? I'm fairly skeptical about this
latter idea since in my experience older people are notoriously absent
when you offer a course in aging. That's something that they
don't want to know about.
But I think that the use of Biblical material, films, fiction,
theater might slip by their defenses and open up new moral and spiritual
horizons. Think of old King Saul or King David, King Lear, "Oedipus
at Colonus," or "Driving Miss Daisy," or "Cocoon"
or "A Trip to Bountiful," if these were examined through
the lenses of ethics and the human spirit.
So where do these thoughts about life-cycle norms, mass
longevity, post-maturity, moral obligation, spiritual development, and
virtues and vices leave us? Where, personally, I feel a sense of awe
and amazement at the sheer abundance of life made possible by the gift
of mass longevity, but what is the price of that gift? I think
that's an open question and it's a political question in part.
Perhaps, as Theodore Roszak argues in America the Wise, the
wisdom of a maturing population promises to be our greatest resource.
I suspect he's overly optimistic, just the way he was when he wrote
The Greening of America back in the 1970s.
Perhaps, on the other hand, education and policy will make
no difference whatsoever, and in that case we might think, as the
Talmud suggests, that a man who is a fool in his youth is also a fool
in his old age, while a man who is wise in his youth is also wise in
his old age. I suspect that the truth between these points of view is
going to depend on how well we learn to identify, support, and
accomplish the moral and spiritual work of aging in our era.
As Plato understood in The Republic, one of the best ways to learn
is by listening to those who have traveled this road ahead of us.
So let me close by listening again to one of my favorite elders,
Florida Scott Maxwell. If you don't know her slender volume,
The Measure of My Days, I strongly encourage you to take
a look at it.
She's writing in her eighties, mid-eighties. She's
very frail, and she's writing from the perspective of a Jungian
analyst. She encourages us to learn that life is a tragic mystery.
She writes, "We are pierced and driven by laws we only half
understand. We find that the lesson we learn again and again is that
of heroic helplessness. Some uncomprehended law holds us at the point
of contradiction where we have no choice, where we do not like that
which we love, where good and bad are inseparable partners to tell
apart, and where we, broken-hearted and ecstatic, can only resolve the
conflict by blindly taking it into our hearts. This used to be called
being in the hands of God. Has anyone any better words to describe
CHAIRMAN KASS: Thank you very much, Professor Cole.
The floor is open for the discussion of this paper.
PROF. MEILAENDER: Thank you. There's a lot there that
I agree with, but it will be interesting if I ask you a question about
something that I'm unsure about.
DR. COLE: Sure.
DR. HANSON: And it has to do with this notion of the late
freedom that you discussed, and discussed as a problem in a way, the
sense that we think of our lives as moving toward a freedom that's
simply a "freedom from" rather than a "freedom for"
I'm always bothered when — and I'll grant this may
just be a defect of character, but I'm always bothered when I learn
that I have an obligation to continue to grow indefinitely —
(laughter) — and that I need lifelong learning, things like that,
since I sort of await the day when I can stop worrying about learning.
I wonder if you don't do sufficient justice to that
"freedom from" idea. I mean it is a "freedom
for." As you described it after all, it's a period of life
when one worries less about being productive and more about certain
relationships with family and friends, and so forth. Those are great
goods in human life, which we might well set over against the good of
being productive and think that they are at least as important. To
find that I am given the gift of a time in life when they can take a
kind of priority doesn't seem to me to be necessarily something to
worry about, but something to be appreciated.
So I wonder if you could just say a little more about what you take
to be the problem here, whether there's any truth to the caveat
that I've tried to articulate, and just reflect a little more
on that notion of the late freedom.
DR. COLE: Sure. I think that's a very good question,
and I agree with the spirit of it.
I think there's a great deal of good in the late
freedom, and it's a freedom we may be increasingly losing as we
find that older people are being forced by economic circumstances to
retire and go back to work to make ends meet, but I think it's
there for a significant portion of the population. And I think people
choose to do wonderful things with it.
A level of volunteering, for example, that people with free
time have is pretty impressive. It ranges pretty much, for people 65
and over, it ranges about 25 percent of people choose to volunteer in
some kind of public service. It's usually in a church situation or
religious situation, and they tend to give about 96 hours a year.
They choose to spend time with their children and their
grandchildren. They choose to spend time to read. And these are all
But I think the late freedom is not a complete idea because
I think we do need guidance, more general guidance, and efforts to
create ways of understanding our place in a cycle of generations, so
that we use our freedom in ways that benefit the next generation.
I've read one theologian recently who argues that the
primary obligation of older people is to show the next generation how
to die, which is an interesting sort of point of view. It is more a
pre-modern point of view than a contemporary point of view.
So I think it's an appropriate caveat, and I certainly
choose to use my late freedom, if I'm lucky enough to get it, to
enjoy the hill country in Texas, where we have some land, and it's
a beautiful area. I just want to be there. I just want to spend time
On the other hand, I really have in my mind — and my wife
and I were talking about this — I really have in my mind questions
about how much of our resources we ought to put into building a house
out there and, as Dan knows, clearing cedar and taking care of the raw
land, which in many ways will bring back the native grasses and bring
back wildlife, and so on.
How much resources should we put into that versus
establishing trust funds for our grandchildren? So if we put a
thousand dollars a year in a trust for each of our grandchildren, by
the time they're 18, with any luck, most of their college expenses
will be paid. And what about siblings who have not flourished, but who
may need help when they get older because they don't have adequate
So, again, it is a question of balance. My hope is that we
can explore the late freedom culturally, personally, and publicly in a
more thoughtful way, and especially in ways that are not manipulated by
consumer society, which wants to tell us how to buy our health, how to
buy potence, how to buy health and happiness, and so on.
Anyway, I won't go on there, except to say I accept the
caveat and appreciate it because I certainly don't want to come
across as somebody who thinks that the late freedom is a bad thing. I
just think we need more reflection on what it's for.
CHAIRMAN KASS: Mary Ann, and then Mike, and then Paul.
PROF. GLENDON: I want to thank you for coming back. I
know that when I look back on these years on the Bioethics Council,
I'm going to think of your two presentations as among the high
I can't find much to disagree with. There is something
I hope that one of your sources is wrong about, and that is the idea
that, if you were a fool in your youth, you have to be a fool in your
But what I wanted to ask you about, it's not so much a
question as to ask you to say a little bit more about the political
implications of those very interesting questions you raise on, I think
it's pages 14 and 15 of your paper. You stressed two things
overall, it seems to me. One is that we're living in an
unprecedented situation, and the other is that the past toward coping
with the challenges lies in attending to relationships and context.
So here's the problem, I think, when you're trying
to imagine what a group like ours might be able to contribute, some of
the things that make the situation unprecedented, the greatly increased
need for long-term care on the part of so many people suddenly, and at
the same time the sharp drop in the availability of paid or unpaid
If you could just peer into your crystal ball a little bit,
what do you think a group like ours might be able to do to set better
conditions for coping with those challenges?
DR. COLE: Thanks for that question and thanks for the
I think one thing that can be recommended is the
development of human development policies to strengthen people's
ability to solve their own problems, to be less dependent, because most
of our policies are aimed at solving problems, and appropriately so,
but I think there's much that can be done to educate, enhance, give
incentives for people to become more independent and more
self-sufficient in ways that are gratifying to themselves.
But, of course, the downside of emphasizing that is that I
in no way want to add to the current tendency to begin to dismantle the
welfare state, and especially Social Security and Medicare. We know
that half of the people who are supported by Medicare would be
impoverished without it. We know that, as you said, long-term care is
a looming crisis both in terms of funding and in terms of availability
So that's why I have so much trepidation really in
raising these issues. I guess I would say, from a political point of
view, that it's very important to develop awareness and political
support for taking care of the most vulnerable, which is a sort of
primary principle, and not blaming people. There is a tendency to
blame people for their dependency.
In the 19th century, for example, during a health reform
craze, Alexander Graham, who developed Graham crackers, was in a frenzy
of health reform, which is kind of the predecessor to health promotion
today. He said, if people were sick, it was because they were not
leading good lives, and that if Methuselah, he said if Methuselah had
arthritis, it was his own fault, and Methuselah lived to 969 years. So
encouraged commitment of resources and development of community
participation in caring for the vulnerable and the needy I think it
One thing that I've seen in terms of older people
volunteering their time, there are some networks around the country in
which people sign up as part of a group. I think this takes place in
San Antonio. When they volunteer their time to deliver Meals on
Wheels, to look in on somebody who's house-bound, to help clean, or
whatever, their hours are clocked. They clock their hours over the
years, and then when they become dependent, they're entitled at
least to the number of hours that they have put in, which is an
interesting kind of idea. So there's an attempt.
CHAIRMAN KASS: Mike Gazzaniga. You're first and then
DR. GAZZANIGA: This is maybe just a reference that will
bridge these two talks this morning. There's an ongoing,
three-year study that has been sponsored by the National Institute on
Aging, a report that will be put together by the National Academy of
Science on the social implications of people in an aging community.
People are showing growing interest in the nature of the mentation of
older people and how that impacts the decisions that they are making in
their professions and in their personal social life.
The good news is that, actually, as we age, we get
happier. One of the reasons we get happier is we ignore negative
So the actually great body of research that has gone on, to
give you an example of it, you show older people a series of pictures,
some of which are horrendously objectionable and some very pleasant
pictures, and you subsequently test their memory of the two classes of
pictures, and they have no memory of the objectional pictures and only
of the bucolic ones. So the point being then that — I kind of feel
this myself (laughter) — just getting happier and happier, and so,
therefore, maybe I should be removed from certain tough decisions
because I ignore or deny the tough data that might make you want to
modify your position.
But, anyway, there's a large report that will certainly
be of interest to this committee, and to others, coming out on these
DR. COLE: Yes, I think that's very interesting.
I'm not aware of that.
But I am aware of studies that show in people who are
considered old-old that there seems to be a decline in the functioning
of frontal lobe brain work, and the implication there is important for
ideas about autonomy because I'm not scientifically versed enough
to be able to give you the specifics, but when these frontal lobe
disorders take place, older people are less able to take initiative and
pursue their choices and a course of action. They're more
vulnerable to being influenced by others than they would have been if
this functioning was in place, which is an interesting finding, I
think, and yet another problem for the idea of autonomy in bioethics.
CHAIRMAN KASS: Paul McHugh.
DR. McHUGH: I, too, very much enjoyed your talk, and
it's wonderful to see you back here.
But I'm following on from a number of the comments
already made in relationship to how to understand and give more teeth
perhaps to the process of development that you have, I think, happily
said has transformed itself from the cycle idea to the stages idea of
life. I've always felt that the cycle idea was pointless. It
didn't talk about the fact that people went through development and
learned things and lost things in the process, and that was the natural
reason for there being stages.
So when I hear you talk a lot about Erikson and the like, I
have to tell you I have a visceral aversion to Erikson.
I'm not quite sure where it comes from, but I think
partly it comes from the fact that he was embedded in the Harvard of
the 1950s and 1960s where I was embedded, too, and he accepted the
commitments and virtues of that place at that time and didn't
wonder about stronger virtues.
In fact, part of the difficulty in much of our writing
about elderly people and the way we should think about them does
emphasize the softer virtues rather than the vigorous virtues, a
distinction that I draw from a brilliant woman, Shirley Letwin, who
said, we can have both those virtues; you can be both courageous and
compassionate; you can both be faithful and nonjudgmental; you can be
critical in your judgment and kind, too.
That kind of sense of who we are and how we develop, and
how at each stage the vigorous virtues have to be emphasized and given,
well, to some extent, given authority, I think falls away often in
discussions such as we're having today. So that's the first
thing. Bill and you both do touch upon the vigorous virtues, but
perhaps, in my opinion, not emphasize them enough.
The second thing is that there are reasons why young people
have certain responsibilities and older people have other
responsibilities. This was brought home just a couple of days ago when
I was listening to a woman who had been embedded with our marines in
the Fallujah campaign, and she came to realize that, boy, you've
got to be 19 or 20 to go in there and knock down a wall. She was
following after them and she got very foot sore. She was very brave, I
thought, to be with them, of course, and it was wonderful that she was
there. I saluted her for that. I also salute her for the fact that
she realized that hardy and robust youth have these tasks and are ready
for them in ways that 40- and 50-year-old people are not. But
that's to emphasize the humorous side.
Perhaps the issue that I want to see emphasized here is
what Mike is saying in part. There are reasons why we are asked to
give up certain tasks that we're doing in our lives. For example,
anyone who is going to run a corporation, a department, an organization
of any sort needs physical energy; he needs vision, but he also very
much needs the capacity to fight entropy. Everything is always falling
apart. Let me tell you, fighting entropy is an exercise that you weary
of in the sense that it begins to fill your week, and you begin to shy
away from it.
In fact, to some extent, what Mike is saying is absolutely
right: The reason why old executives need to be replaced is that they
have stopped looking at the problems that they need to fight and are
accepting them as part of benevolent vision that they have. You've
got to get rid of them.
The Dean and I agreed that, when I reached a certain age,
it was time for me to step down as Director, and it did, then, allow
me, because I no longer had to fight so much entropy except my own
entropy, to emphasize my interest in the vision side of my discipline,
and the like, to write more, to think more, to spend time with bright
young people, and older people, too, to develop that.
So I missed two things in your wonderful demonstration. I
missed the emphasis on the vigorous virtues and I missed the idea that,
in contrast to what Erikson says and this soft stuff, the "open
sesame" school of human development (laughter), that's the
humorous side. My mother said I would go far if I forgot that side but
didn't emphasize it.
Nonetheless, there are reasons why hardy and robust youth
have to be the ones that go into Fallujah; middle-aged folks, educated
and powerfully developed and things, need to run organizations. And,
finally, and it's best to take an age somebody should step down if
that organization is going to flourish in the future with new people
who can fight the entropy that the old have permitted.
CHAIRMAN KASS: Some of us, those of us who have senior
cards, resemble that remark, Paul, but never mind.
DR. McHUGH: There's truth in it, though, Leon.
CHAIRMAN KASS: Oh, I was joking.
DR. COLE: Let me try to respond to those comments which
were eloquently put, and I would like to read the source of the woman
who wrote about the stronger virtues and the weaker virtues.
But, first, let me say something that I couldn't find
any way to say in the paper, so I'll say it here. My favorite
definition of virtue is Jonathan Edwards' definition of true
virtue. It comes from a book he wrote late in life, when he was
beginning to think in more aesthetic terms than purely theological
He said, true virtue is absolute love of God and
benevolence towards being in general. I have never heard a statement
about the highest virtue that inspires me any more than that does. Now
that's not an answer to any of your questions at all. It was just
a chance to say something I wanted to say.
I should have listed as one of my questions, when do people
have a responsibility to step aside? That's a key issue, and for
One, because they may not have the capacity to fight
entropy, and the other because they may be holding back the development
of people who need to put their stamp on things and have a limited
amount of time.
If I understand you right, I think there's a
contradiction between your first question and your second question. In
other words, you want to hear more about the vigorous virtues and I
need to know more about what they are to understand them, but you also
make the point that older executives have a declining capacity to fight
entropy in their organizations and in themselves, which would suggest
that they don't have vigorous virtues. That's one of the
reasons why they need to step aside. So I may be missing something
there, but it looks to me like there's a contradiction in those
Finally, let me say that I think what you're pointing
to here is the difficulty our culture has in making room enough for the
contemplative life. We are a "can-do" society. We want to
get things done. We don't much respect, although we're seeing
a resurgence of this, we don't much respect the virtues of
contemplation, of self-reflection, of quiet study, prayer, meditation,
the kinds of things which have the capacity, I think, to help people
grow quieter, calmer, and more benevolent, even though I understand
that Gil Meilaender doesn't really want to have to develop any more
because he just wants to be left alone; I feel that way myself
sometimes, too. But, anyway, that's an attempt to respond.
DR. McHUGH: Let me just respond by saying I see how you
could see those two questions as being contradicting one another, and
it does depend on what I mean by the vigorous virtues. The vigorous
virtues include things like courage, self-reliance, fidelity, and
critical judgment. Amongst them, of course, would come the recognition
that certain powers do decline in that manner, and just as one
doesn't try to necessarily join in the same vigorous physical
activities with hardy and robust youth when you're in your
seventies, so at the same time I think you can have courage and vigor
and vision and at the same time say this is an appropriate time for
another person to take over the running of this matter because fighting
entropy may be not only something that you begin to shy away from after
you've been doing it for a number of years, and knowing what the
fight is about, but also that you may not even recognize the ways that
the corporation is failing, and it needs these younger people who have
vigor of a physical kind and a vision that's complementary but
perhaps expanded on yours; they need to have a chance.
Those are the things.
DR. COLE: Thanks.
CHAIRMAN KASS: But thank you very much for your comments.
Let me make a suggestion. We're at the place we were
scheduled to break. We started a little late. There's still three
people in the cue. If you don't mind, let's take the three
comments and then you would respond to them in one piece, if you
I have myself, Peter, and Dan, Dan Foster.
It seems to me that, agreeing with all that Paul has said
about responsibility of stepping aside and those things, the brunt of
your talk really wasn't about that question as much as it was about
what life should be like for people who have stepped aside and what one
can reasonably expect from them.
I like very much the emphasis in the paper that
authenticity and indeterminate freedom, or even the preoccupation with
health, are somehow, while desirable in themselves, are insufficient
because they are relatively content-free in terms of what healthy,
authentic freedom should be used for, so that life is somehow
I mean, I'm seduced by the paper and the sort of idea of life
that informs it, but — and this may be another one of these
paradoxes that is simply ours to struggle with — but it seems
to me in a world that's after virtue, it seems to me increasingly
difficult to begin to talk about the virtues of those who are past
their prime and to somehow begin to talk the language of the virtues
that one should expect from them or try to cultivate them in a community
in which the language of virtue has ceased to be the coin of the
real, but where we talk about rights or various things of that sort.
So that would be the first point.
And that's made even worse by the fact that, in answer to
Mary Ann's question and nervous about contributing to blaming
the infirmed for their infirmities or trying welfare programs, you
continued to emphasize the neediness rather than the aspects of
the humanity of the old, other than their neediness, which is precisely
the problem that we have fallen into. I mean, to treat the elderly
as either actual or soon-to-be objects of need and care is to cultivate
a certain kind of condescension toward them and the community as
a whole; whereas, what we really want to do is to remember the older
you get, the more you realize what an injustice you have committed
against the elders in previous ages, when you realize that from
the inside they're still the same person they always were, at
least until the very end.
So, to the extent to which we somehow think that what we
have to do is promote the vision of care and the vision of neediness,
we are in ways undermining the very kind of thing that you're
trying to achieve here.
Lastly, it's just kind of a riff on this same point: If,
on the other hand, you are emphasizing the need to enable people
to solve their own problems, to be more independent and self-sufficient,
you're getting in the way of the kind of nice dialect about
receiving with which the paper ended. That is, on the one hand,
you want to say to the old, "Well, don't be objects of
need and care. Be independent. Learn to develop. Learn to grow,"
and do all these sorts of things. That makes it much more difficult
to acknowledge exactly what is true of life as a whole, but especially
in old age, that one of the gifts we have to those who are our descendants
is we provide them with the opportunity, in fact, to care and to
establish those bonds that really are enriching.
Now I don't expect you to solve those paradoxes. I
maybe simply caught the point of the talk. But these are just things
that are prompted both by the talk itself and the way in which
you've proceeded to respond to previous questioners.
I then have Peter. If it gets too much, just interrupt,
but let's take Peter and then Dan, and if you can hold comment
until the end.
DR. LAWLER: Mass longevity is not so much a gift, but a
deliberate project of human beings to overcome the life cycle or
biological constraints. The goal of this effort to overcome these
biological constraints really is freedom from necessity, and this
"freedom from" is especially enjoyed today by the old. So
the question is, what is this "freedom from" for, and the
answer was given very properly by Gil. It was for family, friends, and
you added contemplation. That makes good sense.
But the problem is the process that won us this
"freedom from" is bound to be somewhat bad for families,
friends, and contemplation. This is a problem. This is a paradox.
This is the downside of the upside of the great victory which has
brought us mass longevity.
This is good to know because we can avoid this in our own
cases. During our productive years we shouldn't be so productive
that we're not virtuous enough, so that when we get old, we
don't have family, friends, or the ability to contemplate.
Maybe it will be proper for our Council to highlight this
problem, so that many Americans can avoid this. Nonetheless, I
don't know of any government policy that could solve this problem
or even alleviate the downside of mass longevity.
So it seems to me the government policies you pointed to
had nothing to do with the problem you raised, which was a very good
problem to raise.
CHAIRMAN KASS: Dan Foster.
DR. FOSTER: Well, I was going to say more, but let me just
say two things. Another interesting conflict that Peter hinted at
right here is that in much of the world today the essential problem is
to get an aging population — if you look in southern Africa, the life
expectancy because of AIDS is 40 years. If you look in the developed
countries, we may have a solution to the aged in the long run because
the birth rate has gone down dramatically in the developing countries
which are there.
You could solve the problem of the aging in this country if
you dismantle Medicare, and so forth, because they would die. The best
health insurance in the world is to not keep people alive, you know, to
do that. So you could have a correction simply by saying, well, okay,
we're not going to treat people.
But the other side of that is that where the birth rate is
high and where disease is not overwhelming, most of the children are
coming out of resources and out of parents who don't have the
opportunities to develop in a sense. So what is happening is — and
it's, I think, happening, will happen in our country and every
place where there are lot of immigrants who have come from places that
they can't help, but they don't have the opportunities to do
things, is that you're going to have a big increase in the
population without the resources to do it.
So my only point is that in much of the world the problem
is that people are dying way too early, and there's a huge moral
consequence that we have treatable diseases that we can't do
anything from a humanity standpoint, but if you want to solve the
problem of too old a population, then you just let that go.
And I would say one other sentence and then I'm
through. Because all of you know that I work in a teaching hospital
that takes care of the poor. Much of what we've talked about today
is applicable to the healthy aging, as people have talked about. Then
you might think of moral things.
Survival is what we talk about every day, just survival. We have
more re-admissions to the hospital for congestive heart failure
than you should possibly have, just because the people, even with
Medicare, can't get their drugs, and a huge number of persons
in Dallas, Texas don't even have Medicaid or Medicare. So you
get them in the hospital, get them out of their congestive heart
failure; two weeks later they're back in — survival.
I mean most of the people that I see that are aged would
not understand one single word of what we're talking about here.
They're talking about mere survival, and to be a recipient and
understand all the arguments for reciprocity, and so forth — anyway,
there are a lot of other things I could say, but I do think it's an
interesting paradox for humanity as a whole, what to do about life
expectancy, whether that's a good thing or a bad thing.
I think a 40-year life expectancy, whether it's in
certain neighborhoods in Washington, D.C., because of drug murders, and
so forth, or anywhere else, or Dallas, or an AIDS epidemic that's
out of this world — and then, of course, we also, with all the wars
that are going on all over the world, we also have wiping out the
CHAIRMAN KASS: Please, as you wish.
DR. COLE: Okay. Thanks for those questions. I'm not
sure I got precisely every point in each comment. So maybe during
lunch we can pick up some of these conversations.
DR. FOSTER: May I interrupt to say don't comment on
whatever — I don't have to have any comments on anything.
DR. COLE: I think there were some real interesting points
I would like to respond to there.
One of Leon's questions was, where does the language
come from that helps us understand what life should be like for people
who have stepped aside? One of the things I need, I think we need —
and, actually, there's an enormous research agenda in this area.
One of the things that the committee could do is suggest the importance
of setting aside funding to study these issues because it's not
there. It's very, very hard in the National Institute on Aging for
humanistic and even social science, qualitative social science projects
to be funded.
I think that the language will come from the people. The
language will not be in our theoretical ideas. I think it will be an
ordinary language, which is why I think we need studies of how people
construe this, even in impoverished, especially in impoverished
situations. Because the woman who comes in for congestive heart
failure and keeps bouncing back in, and is only seemingly concerned
about survival, when she goes back to her home, she may have
grandchildren living with her. She may be in a church environment.
She may have a world view and a world order, independent of the health
care, that helps her make sense of things.
So studying the language, I mean listening to different
communities of older people and how they articulate their relationships
to their churches, to their families, I think we would find an enormous
amount of strength, moral strength, in ordinary life and from ordinary
people, which then could become raised up as exemplary.
On the question of my seeming to emphasize the neediness of
dependent elders, which seems to undercut the idea of their
responsibilities, I think it's very important to begin to try to
think about reciprocity, the need for people who are dependent, are
necessarily dependent, either on their children or people who come in
for home care or in nursing schools, these people need to be needed,
too. Finding ways, however subtle, to allow these people to
reciprocate, and this can happen in genuine relationships that get
started — this is part of Wendy Lustbader's point in her book The
Kindness of Strangers — is one answer to this, by respecting the fact
that these people are not just the demented patient or COPD patient on
a certain floor, but have a whole life, and it's possible for that
life to become intertwined with the lives of others who might like the
stories, who might like the relationships, and caregivers.
On the issue, Peter's issue of mass longevity being a
goal of human effort, I think that's a good point. That's the
Baconian project. That's clearly what modern medicine has been
And you're right that the downside of mass longevity is
something we hadn't anticipated, just the way we didn't
anticipate that, once we were able to cure infectious disease and
create public health conditions that allowed people to live, so their
lifespan went from, life expectancy went from 40 to 75, we didn't
anticipate the emergence of chronic disease and the debilitation that
would come from those added years.
I don't think that means that in either case we
shouldn't embrace and look for the possibilities in those
experiences, and we shouldn't shirk our responsibilities for caring
for people who suffer from those conditions, but I think we should also
find ways to encourage people to take care of themselves and to know
that it really makes a difference.
Compliance rates for so many things among patients is
notoriously low, and I know it's a continuing problem for
physicians and people who work in hospitals to have people bouncing
back because they're just not doing what they need to do to take
care of themselves.
I don't think I have much more to say in response to
Peter's comment, except I would like to learn more about it.
And the last thing is in response to Dan's comments.
My understanding is that, except for southern Africa and Russia, life
expectancy is growing almost everywhere else in ways that we would not
have anticipated, we would not have expected. It represents a serious
crisis because those countries, those states, in the developing world
do not have welfare states in place, do not have resources set aside to
care for declining elders.
A couple of years ago, I was on a committee for the
U.N.'s attempt to conceptualize aging during the International Year
of the Older Person. One of the things that that committee was working
on with this in mind was to reformulate the image of aging in these
countries and in our own country, so that older people became
understood as resources, as people with potential to give, and
wouldn't be seen just as people to marginalize and set aside,
because that is going to be one of the only ways that these countries
are going to be able to allow their older people to flourish, is if
there can be ways for people to understand and cultivate their
abilities to mentor, to keep contributing, to be useful.
So that's my response.
CHAIRMAN KASS: Thank you very much, Tom, for a very rich
discussion. You have given us lots and lots to think about.
We are about 20 minutes behind. That means I'm going
to try to hold you to a 15-minute break, and we'll reconvene at
five after promptly.
(Whereupon, the foregoing matter went off the
record at 10:48 a.m. and went back on the record at 11:10 a.m.)
SESSION 2: AGING AND
CARE-GIVING: OPTIONS FOR DECISION-MAKING
CHAIRMAN KASS: During the break, Judy Crawford has left at
our place the information regarding dinner for those who are joining
us. "I" Street is one street north, and the way to get there
is to walk to "I" and just head west. We will meet there at
6:30, just in case I don't remember in the afternoon session. The
little gray cells are not what they used to be.
This second session actually will pick up on themes that were
at the very end of Tom Cole's paper, where he discussed questions
of independence and dependency. It's a great pleasure for me
to again welcome Carl Schneider, who brings to this subject of medical
decisionmaking the perspective not just of an autonomous autonomist,
but a whole career of teaching family law, among other things.
I think that and the fact that he has a kind of muscular way of
thinking and writing, which I very much admire — I appreciated
these papers that you sent us very much.
We've had discussions in here before about the advance directive
as one way to deal with the problem of decisionmaking for those
who are incapable of making decisions for themselves, and Dr. Schneider
has kindly agreed to lay out for us some of the alternatives, the
strengths and weaknesses, and help us advance our own thinking on
So welcome again, and the floor is yours.
PROF. SCHNEIDER: Thank you. It's very kind of you to
have me here, particularly since you don't need me; you have
Rebecca Dresser, who is as important and useful an authority on this
subject as the country has to offer. It's a particular pleasure
for me to be here because I know and esteem so many of the people on
the commission and their work.
Perhaps I should say a word about myself so that you will
know from whence I come. First of all, I am a lawyer, not a doctor,
although I have an appointment at our medical school. This always
confuses people. You know that I'm not a doctor because I do not
have slides for you.
I work in the part of bioethics that you have generally
been ignoring, and that is the part that deals with the ethics of
medical decisions in various forms, the doctrine of informed consent,
various sorts of attempts at advance directives, end-of-life
decisionmaking generally, physician-assisted suicide; those sorts of
questions are the kinds of questions that you seem to be approaching
and that I have been dealing with.
I am not just a lawyer, but an empiricist. I plan to
provide you not so much with information about what I think, which
should not be very interesting to you, but information about how the
world works, which ought to be very interesting to you.
The kind of empirical information I will be drawing on
starts with medical studies. One of the wonderful things about doctors
is they often seem to care how the world actually functions and they
study it. I have tried to read, as systematically as possible, the
medical literature that deals with the ways decisions are actually
made. I've spent a good deal of time doing research among doctors
and patients, observing and interviewing them.
There is another source of data that I have found
that's quite wonderful. In the United States today there is a kind
of cultural taboo against being seriously ill and not writing a book
There are literally hundreds of these books, and many of
them are wonderful. They are wonderful sources of information and
they're wonderful stories about people. I have consistently found
both this reading and my research among patients genuinely inspiring.
I confess that I have been puzzled about how to be most
useful to you. I have assigned readings in the usual way, but I am
also aware from a quarter of a century of teaching that readings are
not always read. So I could just repeat orally what I have said in
Mr. Levin's letter to me was Caesarean in its
ambitions. Leon Kass' suggestions to me were equally ambitious
although rather different. I tried to find solace and guidance by
reading your transcripts, and as soon as I finished one transcript, I
discovered it was contradicted by the next transcript, at least insofar
as it was giving me guidance about what you might be trying to attempt.
So what I have decided to try to do was to speak to you in
the sadness of experience. The sadness of experience is that your
predecessors in interests, as we lawyers like to say, other commissions
and bioethicists, have over the last several decades provided the
country with a series of bioethical programs. The doctrine of informed
consent is certainly one, new standards for research ethics, the
Patient Self Determination Act, ideas for encouraging organ donation,
and the like.
It is a fair generalization that these bioethical reforms have
consistently failed to achieve the ambitions that their proponents
had for them — consistently failed to achieve those ambitions.
And what I want to do is to talk a little bit about what we
know about how medical decisions are made, how decisions for
incompetent patients are made and might be made, drawing again on the
kind of empirical research that I've been describing, and to try to
talk very briefly then about what lessons you might learn from the
failure of your predecessors.
Everything turns on informed consent. Everything turns on
the ability of competent patients successfully to make contemporaneous
The evidence is that they do not make medical decisions,
even after a full generation now of informed consent, in the way that
the proponents of informed consent, the way that earlier presidential
commissions imagined would happen.
First, doctors do not provide patients with the kind of
information that bioethicists supposed they would. One recent study
suggests that only in 9 percent of the many interactions between doctor
and patient that these researchers observed, only 9 percent of those
cases were patients given the kind of information they would need to
make an intelligent medical decision.
Second, patients do not understand and remember what they
are told. Now why this surprises people is a mystery to me because so
many of us here are teachers, right, and what do we do every semester?
We read the blue books. And what does that tell us? It tells us that
what we said so lucidly and so often was not understood, that even the
work of regurgitating simple facts is not done successfully by students
who are specially picked for their skill at studying the areas you are
If that is true, a fortiori, as we lawyers like to say,
even more strongly must it be true that patients, a completely random
sample of the population, will not fully grasp and understand what they
are told and, indeed, they do not.
One of the areas where decisionmaking has been best studied and where
most efforts have been made to promote good decisionmaking is in
the area of the treatment of breast cancer. One study asked women
who were interested primarily, they said, in survival, what difference
there was in the survival rates of the treatments they were considering,
and only 40 percent of these women answered correctly. This was
after they had consulted on average 5.5 sources of information.
Worse, of the women who said that recurrence was their greatest
concern in making the decision, only 20 percent correctly recited
even a rough rate of recurrence.
So not enough information is given. Not enough information
Third, these problems cannot be solved in the ways that
people have imagined or in any way that I can imagine. These problems
do not exist simply because doctors don't try hard enough and
patients don't try hard enough. No amount of fiddling is going to
change this. Let me give you a few reasons.
Let me say right upfront here that I am not describing one class of
patients in general and myself as a distinction. Many of my best
insights into the foolishness and incomprehension of patients'
decisions come from introspection.
I recently had the gout. I formally consulted two physicians
and was informally volunteered information, including one 20-page
printout from WebMD, from three other physicians. They all had
completely different suggestions to make, all in terms of complete
confidence. I read the 20-page printout. I listened to their advice,
and I still don't know what I should do. I don't even know
whose advice to follow; I respect them all.
PROF. GLENDON: Ask Dan Foster.
PROF. SCHNEIDER: Please don't. Please don't. I
have reached the point of information overload on this question.
CHAIRMAN KASS: It's not a question of information;
this is accurate.
PROF. SCHNEIDER: Ah, I'm glad to hear it.
And this isn't a particularly complicated decision. I
mean people have had gout since, we know, the 18th century. By the
way, it is not caused by drinking too much port.
Where do the problems arise then? Some of the problems
arise from the fact that the literacy of the American population is
quite low. About 45 million people, or roughly one-quarter of the
American population, are functionally illiterate. Another 50 million
are only marginally literate. This means that in one study 42 percent
of the patients could not understand the directions about taking
medicine on an empty stomach when they were written down. Many
patients cannot read the appointment cards that they are given. Many
patients cannot read the cards that tell them how to get to the next
office down the hall.
Many intelligent people just like us have tried for many
years to solve this problem by writing simpler and simpler kinds of
instructions. One recent and sophisticated attempt to do so tried to
provide prostate cancer patients with information about their choices.
When this project was finished, the authors conceded that it could not
be read by half the population.
I have said nothing about the problems of mathematics.
These problems are at least as severe. One of the standard tests of
your numeracy, if that is actually a word, suggests that, asked three
very simple questions, only 16 percent of the population got all three
answers right. Questions like, 10 is what percent of a thousand?
This works itself out in actual medical decisions in
disturbing ways. After being given data about risk reduction from
mammography, from 7 to 33 percent of the women given the information,
depending on how they were given it, estimated the benefit of
But let's suppose all of these problems vanished, that we
have patients with perfect information and perfect understanding.
Will that solve all of the problems that patients have in making
decisions? The answer is no.
And one reason that the answer is no is because what
bioethicists generally assume is that patients come to decisions with a
coherent and well-worked-out set of values relevant to the questions
before them. They do not. Most people have better things to do with
their lives than working out the kinds of values that you might need
for making unanticipated medical decisions or even anticipated ones.
And, in fact, what psychologists who study these things
tell us is that we do not make decisions by consulting our values,
reasoning from them, and then doing what the reasoning tells us.
Rather, our values tend to be explanations that we give for the
decisions we make and not the motives for the decisions themselves.
This is one reason that so often people make very inconsistent kinds of
But let's suppose away not just the problem of
information, but also the problem of values. Would we then make good
decisions? The answer is no again. The answer is no again because, in
order to make a good decision about the future, we have to predict how
we're going to react to the possible results that we might reach in
And there is a very interesting body of research that
psychologists gracelessly call hedonic forecasting. Are people able to
predict what is going to make them happy? Well, now you would think
that nothing would be more important to human beings than thinking
about and being able to predict what's going to make them happy in
the future. People are spectacularly bad at it.
People grossly overestimate, for example, the intensity of
emotions they will feel in the future and, not least, the duration of
emotions that they will feel in the future. This is why, when
you've spent all of that money to buy an Audi, it did not give you
$59,000 worth of satisfaction. The satisfaction peaks the moment you
drive out of the showroom and declines very precipitously thereafter,
just like the price. And there's a reason that the price goes down
Furthermore, people make these mistakes in ways that are
especially relevant to medical decisions. There are some interesting
studies, for example, of people who recently have become quadriplegic
or paraplegic. They tend to picture for themselves a very, very bleak
future, and, indeed, some people are suicidal, have some suicidal
thoughts on receipt of the information.
That is because, among other things, what they are doing is they
are saying, here is a datum; I am paralyzed. How is that fact going
to make my life worse? What they do not say to themselves is, what
are all of the things in life that I value and that give me satisfaction,
and which of those things will I still be able to do, and how will
my psychological immune system try to create ways in which I can
be happy even given this fact?
And there was a famous study which very roughly goes like
this: You take people who have recently become lottery winners and
people who have recently become paralyzed. The lottery winners'
happiness shoots up precipitously; the paralyzed people's happiness
shoots down precipitously. After a year, they have essentially
returned to what some psychologists think of as their happiness
But nobody thinks that that's what he's going to do
when these things happen. People do not predict their own future
happiness very accurately.
Now part of what's going on here is that, in fact,
it's true that experience is in many ways the best teacher, and
experience often counsels us to reconsider our opinions. People these
days routinely recite the mantra that the quality of life is more
important than the quantity of life, and they believe it up to the
point at which the quantity of life actually becomes an issue, at which
point they become remarkably unwilling to give up increments of
quantity in order to get fairly large increments of quality. There are
some very interesting studies of this. People who are very ill think
that their lives are much more satisfactory than observers of their
There's a wonderful book by Wilfrid Sheed on his
experience with depression and cancer and polio, and I think drug
addiction. He said he quickly learned that cancer, even more than
polio, has a disarming way of bargaining downward, beginning with your
whole estate, and then letting you keep the game warden's cottage
or the badminton court, and by the time that it has frightened you to
death and threatened to take away your very existence, you would be
amazed at how little you're willing to settle for.
This is true, but when people are making decisions, this is
not what they imagine themselves thinking. But let's suppose all
of these problems of information and values and psychological insight,
let's suppose those problems all away. Then can patients make good
decisions? And the answer is, you'll be surprised to hear, still
no, and that is because people then have to go through quite an arduous
process of reasoning about which means will best serve their ends.
That is something that people seem not to do very well.
There are many reasons for this. One of them is that we all, in
thinking about all kinds of problems, rely on what psychologists like
to call various kinds of heuristics, shortcuts in our thinking that
make reasoning easier for us. These shortcuts actually turn out to
work pretty well in situations with which we are familiar, but when we
move into unfamiliar territory, these heuristics often serve us very
We have a tendency, for example, to interpret all data as confirming
our earlier opinions. There are fascinating studies of people listening
to presidential debates, and they invariably conclude that the debate
confirmed the wisdom of their earlier opinions and the choice of
candidate on the substantive issues.
People have a very hard time in keeping vivid information from
completely overwhelming dry information, which is why stories about
"my aunt who had this problem" invariably overwhelm more
systematic and reliable statistics
But the problem is not these rather mechanical kind of
heuristics alone. Let me tell you about a study in which I briefly
participated or in which I participated but in which somebody else did
an awful lot of the work.
A physician and I went around to randomly-selected males in
Ann Arbor and we said, "Doctors can't decide whether you ought
to be screened for prostate cancer. So what they have done is to defer
the decision to you. You're supposed to decide whether you want to
be screened. Here are all the data that you need in order to decide
whether you should be screened, and we were willing to spend as much as
an hour and a half talking with these men about whether they wanted to
be PSA screened or not, leaving quite aside the question of just how
many physicians in this world are going to have the time to spend an
hour and a half chatting with the patient about PSA screening.
We worked very hard to be sure that we had solved the
information problem, and then we would say, "So do you want to be
screened?" And they would say yes or no. Either answer, of
course, is acceptable.
But then we would say, "Why do you want to be
screened?" And he would say, "Well, I believe that
prevention is always better than trying to cure something, and so I
want to be screened." Now it is true that it is better to prevent
a disease than to try to treat it, by and large, but it is not true
that PSA screening prevents diseases.
The difficulty here was that they were really latching onto an important
idea that did apply to cancer in many sorts of circumstances, just
not this one. But we would never have found out that they didn't
understand that they were using a wrong heuristic had we not been
doing research and had the time to schmooze with them about the
nature of their reasoning.
But this was a situation where people went through their
reasoning fairly carefully. What I have learned from the studies is
that, by and large, people tend to make medical decisions with an
alacrity that precludes thought.
It is literally true that people make decisions on the spot
a very high percentage of the time. I have observed people being given
choices about modality of dialysis at some length, and this is a
caricature but captures the truth. The informer would start,
"We're very sorry to have to tell you, but your kidneys are
failing and you're going to need some kind of substitute for them.
We have a couple of things to offer you."
Their first thing is called hemodialysis. Now with hemodialysis, we
take two large needles, at which point the patient says, "Needles?
I'll take the other one. What is that?"
But sometimes they would listen placidly through the
needles part and would get to the part where we started to talk about
peritoneal dialysis which involves implanting a tube. "Implanting
a tube," they said, "would it show in the summer when I was
wearing a bathing suit," or I suppose these days when you were
just wearing clothes.
And the physician would say, "Well, yes, it
will." "I'll take the other one. What was that other
one? Oh, yes, the one with the needles, I'll take that."
Now this is, first of all, happening at a speed that makes
it clear that people have not really assimilated and thought about all
the information that may be relevant. In fact, one of the questions
that people never asked and were never provided was data on the
relative morbidity and mortality of the different kinds of dialysis.
Now what is clear is that a significant number of the
people who make decisions are fastening onto a single factor and making
that the sole basis for their decision. Sometimes that's not a bad
thing to do, but with difficult medical decisions this is often a
reckless way of going about making decisions.
Another way that we know something about the process that
people go through in making medical decisions is that, when we ask the
people who write the kinds of books I've been describing, first of
all, they almost never describe making medical decisions. I started
reading these books in the hopes of writing a book on how people made
medical decisions, and I couldn't do it because the data did not
permit me to talk about that.
When they did talk about it, they talked about it in terms
like this: "I've learned to listen to my inner voice for
guidance when choosing treatments. If I get a ding" —
parentheses, a strong instinct — "about a vitamin, herb, drug, or
other treatment, I try it."
Lest you think that this person was not one of us, a
sociologist at Rice describes his experience with prostate cancer, an
experience that he found in some ways an enlivening one because he said
the research was so interesting that he forgot why he was doing it.
But when it actually came to choosing what kind of
treatment he was going to have, he realized that he had made a decision
during a conversation with the surgeon. He did not realize why he had
made the decision. He was not aware of having made the decision. It
was something that he discovered that he had done.
Let me say one last thing about patients and
contemporaneous medical decisions. Many patients do not want to make
medical decisions. That is a fact. That is one of the most
carefully-studied facts in the area that I am describing.
And lest you think it is because they are anxious about
their ignorance, the rates at which physicians say they want to make
their own medical decisions are approximately those of the rates at
which laymen say they want to make their own medical decisions. Now
there are many reasons for this, and the book that I assigned a little
section from talks about them at great length.
But if nothing else, it is going to be hard to get patients
to make good decisions when they don't want to make decisions at
Now, I'm sorry, Leon, when did I start?
CHAIRMAN KASS: Why don't we say at 11:15?
PROF. SCHNEIDER: Okay, I will try to stay within the
various promises I have made about how long I would talk.
So incompetent patients, what to do about them. Well, to
your predecessors in interest, the answer was clear. If people are not
going to be able to make their own decisions at some point, then you
should ask them in advance what decisions they want to have and have
them write that down, and then you will know. And there are still many
people who deeply believe this.
I assigned the article that Angela Fagerlin and I wrote
about living wills. I will not dwell on this subject at length, but I
can tell you that the editor of the Hastings Center Report tells me
that he has never gotten more responses to any article they have ever
published than that one, and, believe me, there are many people who are
deeply angry at me.
Just before I left Ann Arbor, I got a letter from a
physician who said, "You have destroyed my reputation in my
community. I have been arguing in favor of living wills for all these
years, and how do you explain the Schiavo case if what you said is
true?" This is a virtually verbatim quotation from the email
message I got.
So I'm not jousting at a strawman, if that's not a
terribly mixed metaphor, when I tell you that this is a subject about
which there are still lively differences of opinions.
Now, essentially, much of my argument about why living
wills do not work and cannot be made to work is, again, an a fortiori
argument from the situation I've just described as contemporaneous
medical decisions. Essentially, if people don't make very good
medical decisions contemporaneously, it is not reasonable to expect
that they're going to make very good medical decisions about a
situation they have not experienced from among many situations that
they might encounter using treatments that they don't know anything
about. And, in fact, the problem of speculative decisions is one that
many patients themselves are well aware of.
Not least, too, are the informational problems. One of the
things that I have to say disturbs me most about the enthusiasm for
living wills is that everything that autonomists, bioethicists, and
presidential commissions say about the importance of informed consent
evaporates when they begin to talk about advance directives. People
write advance directives with literally no information at all, and they
live in a miasma of misinformation.
People believe, for example, that CPR works as often in
life as it does on ER.
And I'm not making this up. There are studies both of
how often CPR works on ER — a lot of the time most of the people who
get it are quite young and don't have heart problems particularly,
and there are a lot of studies about how much people know about CPR.
When you tell people what CPR actually does and how well it works,
people's enthusiasm for it plummets.
But people who write advance directives, whether they are
administered by doctors or by lawyers or by the many websites that are
available to you, or my mother's technique which was, after
listening to one of my colleagues talk about the Cruzan case on
television, she sends me, of course, regularly a packet of clippings
that I ought to be interested in. Affixed to one of them was a large
post-it note that she had written in pencil. My mother has a Ph.D. in
English literature; she is not an uneducated person and she's very
She writes, "To whom it may concern:" on this
post-it in pencil. "I do not wish to be treated by heroic means
or extraordinary measures. Sincerely yours, Dorothy Schneider."
All of these people, even with the most expert help, do not
have the kind of information they need to make a decision in any way
that a bioethicist would recognize.
The other problems of living wills I've already
discussed at length in the article and will not repeat.
The bottom line that I think is often not paid as much
attention to as should be is that the evidence we have is that, by and
large, advance directives do not affect patient care. In other words,
whether they should work or not, they don't.
So if living wills don't work, what, then, for
incompetent patients? And this topic has been discussed largely in
terms of what standards we ought to use when surrogates make decisions
for incompetent patients. Of course, the two standards are what is
very oddly called substituted judgment, which means trying to do what
the patient would have done, and the best interest standard, which
means trying to do what you think would be best for the patient. Those
are the two standards.
I will not discuss the best interest standard because there
is nobody in the country who has written more about it and better about
it than Rebecca has, and I believe you're discussing it this
Let me talk about the subjective judgment standard —
I'm sorry, the substituted judgment standard. It asks the
impossible. It asks you to read patients' minds. You cannot read
Because my time is drawing short, because there are many objections
I know you will have that I am anxious to explain away, let me just
say that this is another a fortiori argument. If patients do not
make decisions with full information, do not have coherent sets
of values that they reason from, do not predict their preferences
very accurately, do not spend much time reasoning about things,
and reason in ways that look close to arbitrary and trivial part
of the time, it is not going to be possible for surrogates to try
to replicate the process of reasoning that a patient would have
gone through to make a decision. It is in that sense that I mean
that the surrogate cannot read the patient's mind. Indeed,
as I've tried to suggest, the patient himself often has trouble
reading the patient's mind.
What we do know about the attempts to have surrogates read
patients' minds is very disturbing. I've already told you that
observers are not very good at describing how happy patients are in
their current medical situation. By the way, families are a little
better than chance. This is very crude but basically true. Doctors
operate at about the level of a coin flip in understanding how their
patients perceived their current situation.
Once again, these are not trivial problems that can be
solved by better education. Many problems cannot be solved by better
education, and this is not one that can be.
There is a very interesting study in which the surrogates
were people who had known the patient on average for 40 years. They
were mostly spouses of elderly people. They were asked to describe how
the patient would wish to be treated, how the patient would forecast he
would wish to be treated in a series of hypothetical situations.
The surrogates who had known the patient for over 40 years
were right at a level a little better than chance. So then you said,
"Let them read the living will that these people have drafted and
that will solve the problem." The meter did not budge. The
predictions were no more accurate.
Then they said, "Well" — this is what many
doctors recommend — "just talk to your family about what you want
and then they'll be able to do it." So they had the spouses
sit down and talk about these things and to discuss the living will as
a conversation starter. Once again, the meter did not budge. Accuracy
of prediction did not increase.
Now let me say very briefly here that in some ways the
discussion about what the standard of decision for the surrogate to use
should be is not a discussion that will produce changes in the world.
The reason it won't produce changes in the world, at least in any
very direct way, is that — and here I'm speaking as a lawyer —
the law is very poorly situated to affect the way these decisions are
made. The law doesn't have a point of entry into these decisions.
These decisions are made in private. They are made by people who do
not wish to be supervised by the law and who won't tell the law
what's going on, by and large.
They are decisions which can be evaluated in terms of
whether the standards were properly applied only by describing the
reasoning that was gone through. However, both of these standards are
sufficiently indeterminate that you can justify almost any generally
plausible result under either theory. In fact, the two theories often
collapse into each other.
Furthermore, if there's one thing that's true about
courts, they do not want to take jurisdiction over these questions, and
they have repeatedly rejected opportunities to supervise this process.
Now where does that leave us? Well, in the law what we do
if substantive standards can't be found to resolve a question is we
say, let us try to find some procedure that we can use that will tend
to produce generally-satisfactory results in as many cases as
possible. When substance fails, we look to procedure. That is one
technique we can use.
Another technique we could use, and this is one that
bioethicists and presidential commissions rarely use, but seems to me
to be quite sensible, which is to ask patients in general how they
would like things to be solved. We spend a lot of time talking about
autonomy, but we always tell people what kind of autonomy they should
want and how they should want to use it.
If you go around and ask human beings how they want these decisions
to be made, they do not tell you that what they want is autonomy,
and they don't even feel in anything like the way that you would
suppose that what's important is the decision they would have
made. In fact, there are a couple of very interesting studies in
which patients are told, "Imagine you have the ideal living
will that perfectly expresses your preferences, and suppose that
some person appointed by the law were your surrogate, not necessarily
the person you would have chosen, but the person appointed by the
law to be your surrogate, and the surrogate wants to do something
different. Would you object?" And 54 percent of the people
said that, even in that situation, they would not object, that they
would want their decision to be overridden, not least because they
say, "Well, how do I know what's going to happen? They're
Furthermore, patients want not just a reasonable decision
based on the current facts; they also want a decision made by people
they love and by people who love them. This is very important to them.
And part of the reason it's very important to them, of course,
is because patients are non-autonomous in another sense. When courts
talk and bioethicists talk about autonomy, what they tend to talk
about are the interests of the patients. What patients tend to
talk about are the interests of their families. Patients are, obviously,
very concerned with how the decisions that are made for them will
affect their families, and that's one reason that they want
their families to be involved in these decisions.
So if we ask patients what they want, we get an answer that
is much more tolerant of a best interest kind of decision as long as it
is made by the right kinds of people, made, in other words, by their
Now what about the lawyer's response trying to find a
process? Well, lawyers will instantly begin to think about formal
processes and that leads to talk about due process and that leads to
But lawyers think a lot about informal process, and what
lawyers essentially imagine is a process in which the family and the
doctors negotiate, exchange information and opinions, and reach a
process of consensus. That is what I would suggest to you would be an
informal process that would be as likely as any other process that one
can reasonably imagine and pay for to reach relatively decent
And, in fact, there are studies of how these decisions are
actually made today. What they suggest is exactly what I have
described, that there is this process in which the patient is failing,
and somebody raises the possibility not of, as it is vulgarly put,
pulling the plug, but of beginning to pull back on treatments, of not
pressing as hard as you were, by gradually withdrawing particular kinds
These studies suggest that over the space of a very short
time, for most patients as little as 24 hours, that decision is made.
Now the interesting question, of course, is whether these are good
decisions, and, of course, the problem is we have no way of evaluating
the decisions because we don't know what good is.
But when you ask the families who went through this process
whether they are contented with the decisions that they have made, the
answer is yes. They were not happy with the decision because the
decision is an unhappy decision, but they felt that they had gone
through a useful process; they had tried to do the best; they had tried
to do everything they could for the patient and to get as much
information as they could, and that they had reached a decision which
they could live with.
What they're unhappy about is what bioethicists tend
not to care about. It's much more commonplace and quotidian kinds
of things. Oddly enough, that's what competent patients making
contemporary decisions care about much more than their autonomy.
They want, of course, competent medical care. They also
want to be treated kindly, solicitously. That is what they often feel
they don't get, and that's what wounds them much more than the
kinds of denials of autonomy that bioethicists find themselves
What worries the families is that they are not adequately kept
involved day to day as decisions are actually — or as the
patient's situation changes. They have a hard time getting ahold
of doctors, and you have these pitiable stories of wives afraid
to go to the bathroom because, if they leave their husband's
side for two minutes, the doctor may come and go, and they won't
have a chance to talk with him for another 24 hours.
This is the kind of real medical situation that could
actually be solved by human intervention and ingenuity in a way that
the other kinds of problems I'm describing cannot, and solving
those sorts of problems would have much more to do with increasing
human happiness than one more test for how incompetent patients ought
to be treated.
I don't want you to think that I am abandoning
autonomy. Obviously, there are real reasons that we want people to be
able to make decisions for themselves. I would even argue that the
process I have described in which surrogates make decisions for you, in
following their best sense of what would be good for you, that that
process is not one that necessarily offends sensible ideas about
Speaking once again as a lawyer, people appoint agents to
work for them all the time on the understanding that the agents are
going to use their own best judgment and not the person's. That is
why I do not manage my own investments; I hire mutual funds to operate
We regularly hire people to work for us. In fact, there is
a quite respectable theory of political representation that says the
job of a representative is not to do exactly what he is told, but
rather to exercise his judgment on your behalf. It is associated with
Edmund Burke, of course, and he famously wrote to the people who had
elected him, "Your representative owes you not his industry only,
but his judgment and he betrays it instead of serving you if he
sacrifices it to your opinion."
Now I've taken up more time than I expected to, and
I've learned the best way not to go over your allotted time is
simply to stop. I will do that after saying one more thing that I did
promise to say, and that's to talk very briefly about why your
predecessors in interest, why so many bioethicists have produced so
many programs that work so very badly.
I think there are many answers, all of which I will be
happy to supply you with, but two I would like to leave you with. The
first is that they were in the grip of an ideology so strong to which
they were so deeply wedded, which worked in such absolutist terms that
it was all they could think about; their allegiance to the principle of
autonomy was so great that it was all they could think about.
Second, as Clark Gable said as he walked out the door,
"Frankly, my dear, I don't give a damn," was pretty much
the attitude of these entities, commissions and bioethicists, to
empirical questions, to the way world works. They did not actually
stop to think about whether what they were producing was going to
produce the kinds of changes in the world that they wanted.
They did not ask, ever, whether patients wanted to be made autonomous
in the ways that the bioethicists proposed to make them autonomous.
They did not ask how people actually go about making decisions.
They did not ask why things are the way they are. Things are the
way they are not necessarily for good reasons, but usually for real
reasons. If you want to change the world, you have to ask why it
operates the way that it does.
They believed that their principle could produce programs
that would work, and they were wrong.
CHAIRMAN KASS: This was, to say the least, not a
disappointment in expectations. Thank you very, very much for the
lovely talk, very stimulating.
Jim Wilson, who is the Council's self-appointed most
empirical member, has the floor.
PROF. WILSON: I appreciate, Carl, in your wonderful
testimony you have limited your comments to lawyer and physicians and
did not include economists, all of whom have said there would be
serious agency problems such that the family wishing to inherit the ill
person's inheritance would vote for a preemptive withholding of
care. The economists get this wrong, as they get many other things
I, like everyone in this room, or I assume most people in this
room, had to participate personally in the kind of decision you
discuss. My sister and I, talking with our doctor about my mother,
in 24 hours we made a decision. It was a sad decision. We believed
it was a necessary decision, and in a day or two she was dead.
This is not an unusual phenomenon.
How would you distinguish the process that you have
proposed, and in which I have engaged, from the kinds of
assisted-suicide laws that now appear to be on the books in the
Netherlands and Oregon in which something similar, though not, I think,
quite identical to what you describe is done, and it has led to deep
criticism for euthanasia, as sometimes used with respect to the
PROF. SCHNEIDER: Well, let me say several things. First
of all, I'm delighted to take this opportunity to acknowledge that
some of my allegiance to empiricism came from having been a student in
Professor Wilson's class on bureaucracy more decades ago than
either one of us wants to admit.
In fact, it was my recollections of that very class that
urged me, that led me to think quite often both in the book that I
wrote on autonomy that I assigned part of and in preparing for today,
that instead of talking once again about advance directives, that you
might be better employed if you spent your time thinking about what is
really one of the things that's really changing the situation of
American patients and of American medical ethics and bioethics, which
is that patients and doctors and bioethicists increasingly live in a
bureaucratic environment that shapes their lives in ways that are often
very painful and that we do not think very much about.
Let me say, second, that the law has not known what to do
with what you and I have been talking about, with the realization that
what most people want is for the family to make their decision; that
what most families want is to be able to make the decision, and that
there are special reasons for thinking the family might make a good
decision and wanting to make the decision even if we're not so
confident that it's going to make a wonderful decision.
The law has been torn in ways that the law can't
resolve, partly, of course, because the law isn't the law; the law,
as Mary Ann would remind me, if I did not say, in the United States
comes from well over 50 jurisdictions, and it comes from many
institutions within each jurisdiction that produce different sorts of
But even the United States Supreme Court can't decide whether
the family is endowed with virtually holy powers over its members
or whether the family is the worst thing that any member ever encountered.
You have some very strange opinions in — let me take some
state court examples.
You have these tragic situations in which adult
schizophrenics are being cared for by their families, and they go to
the court and they say, "Our son does not want to take
anti-psychotic medication. We believe that would be in his
And the court says, "So you want to be appointed his
guardian. You may be appointed his guardian, but we're not going
to make you his guardian to make medical decisions for him because we
don't trust you to do it, because your interests are different from
his, and this is a decision that should be made only with his interest
in mind." And by that, they mean his interest as opposed to the
family's. They look at it with deep skepticism.
Similarly, there are some very interesting cases in which
families come to a court and they say, "We want your permission to
allow or to require or to have one of our children donate a kidney to
another child." And some of the courts say, no, that is a
decision that no family should ever be allowed to make because of this
kind of conflict of interest that families have.
So you have Parham v. J.R. on one hand, in which the United
States Supreme Court says, of course, parents should make medical
decisions for their children; that is part of the holy right of being
a parent. At the same time, you have this kind of hostility.
And, of course, both attitudes have real basis both in law
and in policy. There are good reasons for both.
What you have to do here is something the courts cannot do,
particularly when they are deciding constitutional cases, and that is
to say, "We have to choose a public policy that is not ideal
because there is no ideal public policy. We have to choose a public
policy that will produce good results as much of the time as can be
arranged." And that means we're going to have to tolerate
some bad decisions. That is something that people are very unwilling
to do because the bad decision looks so horrible, but any system will
produce bad decisions.
Now assisted suicides, euthanasia, the answer is, yes, that
is, that it's not so clear that the process I'm describing is
so different from what is tolerated in those circumstances, and the
reasons that I distinguish between the two, I think that legalizing
assisted suicide is a mistake, has to do with the need to draw an
arbitrary line someplace between always treat all the time in every way
and the increasingly anarchic rule that a place like Holland seems to
So I think that what we do is to draw a line, which may not
make entire logical sense, between allowing people to be fairly free
about withdrawing care but not letting the same people reach a decision
with the same effect if it involves something that looks to us more
PROF. WILSON: Can I just modify? It seems to me, from the
little I know about the Netherlands law, that one of its consequences
is to draw the line in a way that favors the doctors more than the
families. Now I may be in error in that judgment. People dispute
what's going on there.
But if it draws a line in a way that favors doctors more
than families, it has made, to me, a grievous mistake because it
misjudges and I think weakens a doctor's obligation, first and
foremost, to heal the patient. If it draws the line in a way that
simply says the doctor may participate in a conversation with family
members and give such advice as he may have, then that would be a
Do you happen to know how that line is drawn in the
PROF. SCHNEIDER: I don't know what's happening in
the Netherlands because the evidence is so very difficult to get. When
I have spoken with Dutch physicians and bioethicists about this, they
become easily angered at the suggestion that anything is happening in
Holland that should not be.
On the other hand, there are people who believe with a
crusader's zeal that what is happening is simple butchery, and the
anecdotes are very disturbing, like physicians deciding unilaterally
that a nun ought to be euthanized because the only objection she had to
being euthanized was a religious one, and that if she had been thinking
more realistically without the influence of religion, she would have
reached a different conclusion. You know, these sorts of anecdotes, of
course, are not a basis for — and we don't even know if
I would say that you point to, obviously, one of the
dangers of the proposal, which is that bad decisions will be made,
particularly bad decisions to withdraw treatment too early. The one
thing I would say is that it is, as you know, a mistake to suppose that
the only agency of social regulation is the law. These are not
decisions that are made in a culturally-free way or in an
institutionally-free way. It is open to the physician and it is open
to the family to object to a decision not to treat. Conventionally,
those decisions can be taken to ethics committees, and, in fact, they
can be taken to courts, and sometimes they are.
CHAIRMAN KASS: Could I follow up, with your permission,
In the presentation, which also prompted Jim's
question, you talked, you highlighted those circumstances where the
patient is failing and we're really talking about acutely
end-of-life decisions, and that's, I think, why the question of
assisted suicide sort of hovers over that discussion.
But in the previous meetings of this Council in this area,
we have spent a lot of time talking about the questions of medical
decisionmaking for incompetent patients who are not immediately dying,
and the classic problem is the problem of people with Alzheimer's
Disease in various stages, where the question is not, well, should you
begin to draw back from things that you're doing because the end
seems imminent, but how should you decide about how to treat various
kinds of eruptions and supervene on this illness at various different
stages? In fact, we're going to get into the discussion of that
this afternoon with the help of Rebecca's words, if not her
So I wonder whether you would be prepared to generalize the advice
that you've given; namely, with respect to procedures, some
kind of consultative process, family-central in a way of the loved
ones with the responsibility to help decide, participation of the
patient if and when possible, participation of the physician and
the like. Is that true? The first point. And, second, do you have
any intuitions on the substantive questions? Or, maybe to put it
another way, are there boundary conditions that you would place
on the discretion of the family decisionmakers where the question
is not, "Shall it be these 24 hours or 48 hours or another
I'm not sure I said that very well, but two questions:
one about the process generalized when you don't face an immediate
end-of-life question, and, second, do you have any sort of substantive
comments about the kind of discretion that families should have? Would
this Council be well advised to consider setting some limits or trying
to articulate some limits or is this really a question of you simply
have to judge to prudence, to loving prudence, on the spot?
PROF. SCHNEIDER: It seems to me that what I have said
about, as you correctly point out, end-of-life decisions applies to
more ordinary, more prolonged kinds of situations. At least important
differences do not occur to me. In fact, part of what I'm trying
to do is to allow for a broader range of interests to be accommodated
than are accommodated when you start setting standards.
It is one of the mysteries of bioethics why the
patient's interests are the only interests that are supposed to be
taken into account in making medical decisions when there are so many
other people who are at interest. Here, of course, the kind of
situation you're hypothesizing is one where, by and large, families
have been spending a lot of time taking care of the patient and have
genuine interests that cannot be accommodated by the law and by legal
standards and by formal standards, but that can be accommodated by more
Should the law set some sort of outer limits? Well, of
course, the law does set some —
CHAIRMAN KASS: Excuse me. Not necessarily the law —
PROF. SCHNEIDER: Fair enough.
CHAIRMAN KASS: — because our audience here might be best
practices committees that are fashioned or —
PROF. SCHNEIDER: Fair enough.
CHAIRMAN KASS: — or the community. It wasn't simply
a question of legislation.
PROF. SCHNEIDER: Should formal standards somehow be set? I
agree with what Rebecca says about the desirability of looking at
patients' best interests all along the line and using the best
interest standard instead of trying to go through the fiction of
substituted judgment, because I think it allows you to get around
the kinds of problems of faulty decisionmaking that I have described
and because, well, of all the reasons that Rebecca says, and because
I agree with all of those.
Obviously, there are limits and the law does set some
limits that you can't kill people. There are those sorts of
constraints, and there are the kinds of informal limits of what people
will tolerate and what they'll object to and when they'll fight
that are set up.
I have to say I can't imagine how you can usefully
write a set of standards that will apply very well here, partly for the
kinds of reasons I was suggesting beforehand. You really have to know
what the range of situations is, and you don't.
So quite apart from the difficulty of generalizing,
you've got to have more data than you've got. What I would do
at this point is what the lawyer in me suggests, which is to rely on a
more common-law process.
Things have moved very fast in this area. Standards have
changed very quickly. It's not as though people aren't
thinking about this and aren't responding.
I would, in the absence of information that some things are
going seriously wrong more frequently than is tolerable, I would wait
to see how standards develop informally and what kinds of situations
recur and what sorts of rules seem to be working out well.
CHAIRMAN KASS: Gil Meilaender.
PROF. MEILAENDER: There was so much that seems to me wise
in what you said, and so in a way I would like to just leave it
alone, but I wonder if I can just press you to comment on a couple
of different things. They cut in different ways. They don't
cut in just one way.
First of all, you said one of the reasons you thought that
bioethics and predecessor commissions, and so forth, have gone wrong
here is that they were in the grip of an ideology about autonomy, and I
do not disagree with that. I agree with it, in fact.
But one might argue that the ideology was necessary in the face
of kind of a long tradition of medical paternalism, and so forth.
I mean that's sort of a standard answer.
I just wonder, I would be interested to know whether you
think there's anything to that standard answer, and that in a way
that was a correction to which you're now providing a correction,
and so forth. That's one kind of question.
The other one in a way is related to these previous
questions about boundaries and standards. Just, again, not so much
asking you to develop a whole set of standards, I take what you say
about the difficulty of that. I'm just curious to know what you
would say about a few sorts of cases in terms of whether we can set
For instance, the kinds of cases of which there have been
several over the years of children born who will be, at least to some
degree, retarded who are in need of immediate surgery, which we would
probably give to any non-retarded child, whether any sort of standards
there, whether that's sort of a bosom-of-the-family decision in
Or the case of parents who would like to have an older retarded child
sterilized, for instance. I took your discussion of the schizophrenia
example to be rather sympathetic to the parents, and surely the
sterilization cases are every bit as complicated in some cases for
the family in terms of what they have to deal with, but it's
a different kind of issue.
And without developing a code or anything, I would just be
curious to know kind of how you think about cases like that.
PROF. SCHNEIDER: The first question is about whether the
strong version of autonomy was a necessary corrective to medical
imperialism. First, I think that the strong version of autonomy
actually served a variety of implicit purposes, but did so by
indirection and very clumsily and in ways people didn't fully
One of the reasons that you see a lot of the literature
that you see about autonomy and end-of-life decisions is because people
were implicitly assuming that doctors were crazed to keep metabolic
function going, that they protracted life too much. You see that in
discussions of the living will where the assumption is the living will
is going to say: Don't treat me.
In fact, one of the scary experiences I have once a year, I
teach fourth year medical students. That's fun. I enjoy them.
They're very bright, and I like them. But the first day I always
use a case in which a patient comes into the hospital with a living
will and she has unhappy things happening to her, and I say, "So
do we treat this nice lady?" And they say no.
And I say, "Why?" And they say, "Well, she
has a living will."
And I say, "What does it say?" And they say,
"Well, she has a living will. You don't treat her."
This is one of the many reasons I don't have a living
Doctors cannot be persuaded to read them. Nurses don't
read them, either. They think they're a DNR order.
Now what's happened, it's not clear that doctors
really were that mad to keep people indefinitely alive in the first
place. It is increasingly plain that that is far less true than it
once was. I'm not saying that there are not still lots of doctors
who may do that, but if you look at the data, they suggest that
doctors' attitudes have changed a lot on this question.
When I hang around ICU units, what I see in my teaching
hospital, what I see is the attending teaching interns and residents to
begin hanging crepe, to begin talking about the limits of what medicine
can do, and teaching the doctors to initiate the discussion of stopping
So one of the problems with the whole autonomy device is
that it has incorporated these kinds of implicit, substantive goals
that are thought to be promoted by this strong version of autonomy.
Mastectomies, Jay Katz' book on The Silent World of Doctor
and Patient essentially says, and it's a wonderful book
that you should all read if you haven't, essentially says one
reason we want patients to have autonomy is because doctors were
performing too many mastectomies.
So I think a lot goes on in the way of attempts to change
particular aspects of medicine that seem to be promoted by promoting a
strong version of autonomy. I think that one thing that it would be
wise to do is to try to check up on what sorts of assumptions
you're making about what is actually happening and what effect a
stronger version of autonomy might have.
The other thing I want to say about that is it is wrong to
think that doctors, and anybody else, will only change their behavior
if the law tells them to or if bioethics tells them to. People are
all, we're all affected by the stronger movements in our culture,
and one of those movements is you don't make decisions for other
people. In fact, one of them is it's wrong of other people to ask
me to make decisions for them.
Doctors, I think, insofar as they've changed their
behavior, have done it for lots of reasons that would have applied even
had there been no exaggerated version of autonomism.
The second question was about whether there aren't
situations in which I would begin to draw lines. The answer is yes,
but not a priori. If I were you, I would not set out to say where
should the lines be drawn.
I think that the situations that you have described are
exactly the kinds of situations where you should proceed cautiously and
incrementally in the common-law way that I've described, and when
one of these cases actually arrives, you can look at it in some of its
actual facts and make a more intelligent decision than you can make by
reasoning about it.
I would be inclined to want to intervene in your first case
and not in your second case.
CHAIRMAN KASS: Gil, do you want to follow up?
Well, let me pursue this last as well. Again, I don't
want to steal a march on this afternoon's discussion, but precisely
because people, the culture believes that we should make our own
decisions and that it would be wrong, many people believe it would be
wrong to place such burdens on others, and we have had a discussion of
a paper of Gil's at a previous meeting on this subject, there is a
certain kind of pretense that there aren't substantive
considerations that actually enter into either the substituted judgment
or to the best interest standards when applied.
It seems to me one of the concerns is we have in a way, we
have, I suppose — I was going to propose two polar choices, and I
think you're probably suggesting that there really is a third. But
what I was starting to say was that you've got two choices. You
can either pretend that the situation is good if the process is good
and we don't pay attention to the substance. If everybody is sort
of comfortable, we've gone through this, that that's the best
to hope for, and we kid ourselves in thinking that due process is right
conduct in these matters.
The alternative is to make explicit the fact that there
are, in fact, substantive decisions that are being made about when a
life is or is not worth living, and that perhaps less mischief were
done if we sort of owned up to that fact, and then tried to set certain
kinds of boundary conditions that would hem in discretion not only
against undertreatment, but also against certain kinds of overtreatment
and, of course, against deliberate killing.
So I think maybe you're suggesting that we recognize
that best interest standards should operate; they are least dangerous
when nobody tells you what they should be, and you allow the people on
the spot to conscientiously worry this through, providing you might
say, well, no direct killing, but after that who's to say?
PROF. SCHNEIDER: No. No, that's not exactly what
I'm saying. I'm saying that you may very well, as you begin to
see cases in which rather mildly retarded people, children, are being
allowed to die when everybody else would be allowed to live — in fact,
those are cases where there are actually legal rules — that as those
develop, that then you say this far and no further, but you don't
try to sit down in advance and imagine what circumstances you would
permit and what circumstances you wouldn't permit, partly because I
think these cases are, as lawyers say, very fact-intensive; that they
will look very different depending on rather mild changes in a whole
lot of different factors.
It's the same problem as the problem of the planned
economy; you just can't anticipate all of those things in advance.
CHAIRMAN KASS: Dan and then Paul
DR. FOSTER: I can't speak for all doctors at all in
these issues, and I know a lot of doctors, but one of the things that
has not come up here in this concern about doctors and patients and
families making decisions is this: that very often, when a serious
illness comes up and there are options, whether it's prostate
carcinoma or something, almost always the family in loving asks me this
question: What would you do if this was your mother? Or what would
you do if this was your son? Or what would you do if this was your
In other words, there is a conscious appeal — if they
trust the physician, then they want to hear from somebody who is
presumably reasonably knowledgeable about this, about what you would
do. Sometimes decisions are very hard to make, but they always want,
it seems to me they want to ask.
I think I cited this paper sometime in the past. I
can't remember whether I did. But there's a most famous paper
written by the late Franz —
PROF. SCHNEIDER: Franz Ingelfinger.
DR. FOSTER: — Ingelfinger called "Arrogance."
PROF. SCHNEIDER: Uh-hum.
DR. FOSTER: And you will remember that he, who had worked all
his life on the esophagus, got an esophageal carcinoma, and he was
the editor of The New England Journal of Medicine. As a consequence,
he was probably the best known person in the world since this was
the most widely read journal in all the world. And when his diagnosis
was made known, he was just drowned in opinions from doctors all
over the world about what he should do for therapy. His children
were doctors also, and he described his anxiety about trying to
decide radiation or surgery first, or whatever.
Finally, somebody said to him, "Franz, what you need
is a doctor." And he said he followed that advice and got an
internist that he trusted and he said, "I'm going to do what
you think is best for me."
You know, the discussion often comes to the issue of arrogance
in doctors, wanting to control things. But in a real doctor-patient
relationship, which is hard, as you say, patients want to know what
their doctor thinks. One problem is there is little time for talk,
just time to talk about a decision —
PROF. SCHNEIDER: It always was.
DR. FOSTER: It maybe always was. Perhaps it is not as
stark a new problem as we sometimes make it. Well, you know, there's
a difference between making an informed consent that's informed
by the best science that you have and an informed consent that is
given just because this is the way you feel. I mean you've
made that point.
I'm only arguing to say that I think most people really
would like to have their physician giving an opinion about the best way
to go when you have a serious illness. A trivial illness, it
doesn't make too much difference. I think that they will
oftentimes trust that, and I think that's what Franz Ingelfinger,
that's why he wrote that article in defense of true physicians. I
know there are a lot of people who don't meet the standards of true
physicians, but true physicians really do want to try to do what's
best for their patients under the circumstances, whether to withhold
treatment or to give it maximally.
PROF. SCHNEIDER: Well, this is my opportunity to say that,
of course, I agree with the heart of what you're saying, but that
it's also true that bad things happen when you trust physicians,
that they make decisions for other people sometimes rather rapidly and
unthinkingly, and lots of people don't have physicians they trust,
and never did. It's not just managed care here; these are problems
that go back decades and decades.
And I don't want to be understood to be depreciating
any of the harms that are done when you set up a world in which there
are not ways of stopping people from ending treatment on children where
it shouldn't be ended.
But I also want to say the world has changed a lot. It
used to be that people wrote articles in medical journals talking about
how they starved to death defective children in respectable hospitals.
Because social attitudes have changed so very dramatically about that,
that is something which is now unthinkable or at least will produce
very great anger and very considerable responses.
The problem, of course, is that we can't know all of
the bad things that we object to confidently enough to be able to write
these strong rules in advance. That is what I'm having difficulty
DR. FOSTER: Well, just to cite yourself in response, you
point out that, whether it's the Supreme Court or anything else,
there are possibilities of bad decisions that are made, not for bad
reasons, but because the evidence is not there.
I mean we treated with estrogens for a long time because we think
that this is good, and now we can't take estrogens because we're
going to get cancer.
I always teach the residents, when the evidence changes, we
change. But given the evidence, the best that we have, I mean
we're going to make mistakes because sometimes we don't know
what the genetic background is and sometimes we're just careless,
and sometimes we're just not meeting our responsibilities. But
there's never going to be a case, as your own argument was, from
the courts where bad decisions are not going to — that's an
irrelevant question to me.
The question to me is, do you get better decisions if you
listen to the doctor as opposed to listening to the family under those
circumstances? Have you studied that?
I mean, the errors that doctors make are both sad and in
some cases indefensible, but that's the question that I want to
know. If you take a large population in studying this — maybe there
is such a study; I don't know. You may know of such a study since
you know almost all of this stuff.
But what I would really like to know is, would you get a
better case from having consultation with the doctors and in general
following the physicians' recommendation for care here or to simply
say that the physician will give you — there are four ways you might
treat prostate cancer; which do you want? You know, you use those
sorts of explanations, and they are likely to quickly say, well, if I
can get by without surgery, I'm going to stick rods or pellets in
my prostate, and so forth.
That's the question. Is there a study that would give
you some hint as to which, by any objective standards, you would get
some idea about which was the best way to go?
PROF. SCHNEIDER: It's the "any objective
standard" phrase that's the problem, that has precluded any
such study, because if you knew what those were, then we wouldn't
have to be having these discussions.
CHAIRMAN KASS: Paul McHugh, take the last question.
DR. McHUGH: I have just a brief question and point because
I found your paper so wonderfully enriching and very supportive of my
PROF. SCHNEIDER: I can't think of a better
DR. McHUGH: I've been fighting living wills since I
first heard the term.
But there is an issue, and I want to come back to what
Professor Wilson was talking about because both of you are my admired
empiricists. I believe that the assisted suicides in Oregon are
usually killing patients of mine; that is, they're killing
psychiatric patients, with other kinds of conditions, of course, but
who have conditions that I usually treat.
Now that's an empirical question, and I would like to
know the answer to it and I would like to have it proven or disproven.
But the people in Oregon who said that they set up this as an
experiment now say we can't look at those records because of the
privacy rules and the privacy kinds of things.
What are you lawyers going to do in relationship to this matter? Because
it's clearly an issue of conflicting goods here, but, ultimately,
lives are at stake and the character of doctoring is also at stake.
PROF. SCHNEIDER: Well, first of all, lawyers do what their
clients tell them to do. Second, I think that the Oregon experiment
suggests one of the benefits of (a) the process I've been
describing and (b) of our federal system.
Justice Brandeis famously talked about the states as
laboratories of democracy, and this is exactly the kind of thing that
he had in mind.
But you're quite right that this extremely valuable and
possibly extraordinarily illuminating experiment that might answer the
kinds of questions that we were discussing will be useless if you
can't get the data.
DR. McHUGH: It's a hell of a laboratory where they
won't let you look at the data.
PROF. SCHNEIDER: Then it's not an experiment.
DR. McHUGH: No, that's right.
CHAIRMAN KASS: Thank you very much.
PROF. SCHNEIDER: Thank you.
CHAIRMAN KASS: Thanks to both of you for really a
We've run over a bit. We were supposed to reconvene at
2:00. Does anybody know convenient places where people could grab
lunch? There aren't any in this building.
PROF. MEILAENDER: There's a Burger King not far away.
CHAIRMAN KASS: We'll meet again at two o'clock.
(Whereupon, the foregoing matter went off the record
for lunch at 12:36 p.m. and went back on the record at 2:05 p.m.)
SESSION 3: AGING AND CARE-GIVING:
ARE THERE OBJECTIVE STANDARDS FOR DECISION-MAKING IN CARING FOR
PATIENTS WITH DEMENTIA?
CHAIRMAN KASS: Can we get started?
Okay. This session, the last of our three sessions on
issues connected with the aging society, is on the subject of aging and
caregiving. And the question is the question we started to discuss
this morning as to whether there are objective standards for
decisionmaking in caring for patients with dementia.
You'll recall that this was the major subject of
discussion prompted by Eric Cohen's paper at the June meeting, and
Rebecca has gone home and prepared a short working paper that's in
your book — issues — it was kind of a summary of the issues for us to
consider as we move forward in this discussion.
Let's assume for the sake of this discussion that we
are beyond advanced directives, that we are beyond substituted
judgment, and that we are talking about a situation where surrogate
caregivers, whether court-appointed or in the better cases family
members, and let's make the best case working in close consultation
with physicians and nurses and all relevant parties.
Let's assume that we have arranged a procedure to
optimize the consideration of the best interests of the patient.
Let's make that the starting assumption, that we've got the
best procedure in place.
The question then is: how do we want to think about the
substantive issues of the judgment themselves, and, in particular, an
issue that we raised last time — to what extent, and under what
circumstances, should diminished capacity itself be part of the things
that weigh into the process of making decisions?
Should one simply content oneself with the fact that
surrogate caregivers assumingly — assuming that they are the right
ones and that we have the right settings, should have discretion to
judge what is in the best interests here and now for those who are
Or is it necessary to think in the abstract — and we heard
Carl Schneider's answer to this question this morning — does it
make any sense, not so much as a matter of law but simply thinking
through the ethics of this, to try to think through in advance whether
there are boundaries or standards to limit this discretion of the
surrogate decisionmakers and caregivers that would protect the
vulnerable against overtreatment, undertreatment, and active killing?
Should the people be free to decide whatever it is that
they wish, or should there be any kind of boundaries or outlying
guidance for those decisions? Quite apart from the question of whether
it makes sense a priori to do this, and I trust that the remarks this
morning will meet some reaction from people who have further thoughts
along that line.
If you assume that it might make sense to try to do so, one
should recognize in advance the danger of trying to set forth such
objective considerations, what degree of dementia might be grounds for
treating a person differently than someone not similarly
And one knows that at that moment one is introducing into
ordinary discourse and with the blessings of practice, and perhaps even
law, certain quality of life considerations that — just to repeat
things that we talked about last time, that begin to suggest that some
lives are not worth living or not worth sustaining.
On the other hand, as Rebecca suggests, not to do so
explicitly, to pretend that we are simply having a procedural solution,
is to ignore the fact that, in fact, such substantive choices are being
made, and precisely with those kinds of values in mind — admittedly
decentralized, admittedly people working it out on their own, and there
is no opportunity to try to set certain kinds of limits where
discretionary practice might, in fact, violate them.
So I think that's the first sort of dilemma that we
face, and I think this Council ought to face the fact that at least one
possibility looking forward is that if we do not think this thing
through and work out some practice — some standards of practice,
whether worked out in the common law manner or by some other means, we
might very well find ourselves under circumstances with this
increasingly aged and increasingly demented population that the absence
of the willingness to grapple with this question through a decade of
infirmity will lead to a great deal of increased pressure for assisted
suicide, and these quick solutions for failure, actually, to grapple
with the delicate decisions that people are making.
Second point by way of introduction, the last time we sort
of tried to take this up in the light of the big questions, in terms of
the categories of moral decisionmaking, but let me suggest that to see
if we can put those intuitions to the test, to try this time not to
sort of stay at the high level of abstraction and talk about whether
dementia should count or not, but to take up the three sort of short
cases that Rebecca has really in the — in the last paragraph — is it
the last or the second-last paragraph of her paper on page — the
bottom of page 8 and the beginning of page 9, and try to proceed
somewhat casuistically through these different cases to see whether
people's intuitions are such that, assuming that we had to take
these things up cases by case, whether there are the beginning
stirrings of what people might want to say by way of standards.
That I think might be an easier way to proceed, so let me
read the paragraph aloud and put it on the record. "An analysis
similar to the one used in the discussion about the circumcision case
could support classifying certain dementia treatment decisions as
outside the limits of acceptable family choice. One example would be
family refusal of oral antibiotics for a patient with mild dementia who
retains the ability to enjoy numerous activities and relationships.
"A much closer case is family refusal of major surgery
or chemotherapy for a patient with moderate dementia. In this
situation, the patient may be unable to understand or remember the
reasons for the restrictions and physical discomfort the interventions
would impose. Some people would see this treatment question as one
that the family should be free to resolve; others would disagree,
arguing that non-treatment would be too detrimental to the patient.
"A third case is family refusal of tube feeding for
'barely conscious' advanced dementia patients. Although this
option may not be covered by a narrow concept of the patient's best
interests, it is often defended as a reasonable choice in light of the
questionable benefit that tube feeding confers on such patients."
And Rebecca, in a way, invites us to try out some kind of
robust, objective approach to treatment decisions, suggests that
developing such an approach requires really public and professional
debate over cases like this. And we could multiply them. I mean, in
fact, one of the troubling things about trying to develop any kind of
standards is the number of cases are really quite infinite, and the
facts will govern.
But, nevertheless, since this is — this is where the last
discussion and this paper have led the conversation, let's try it
out and let's — if you're willing to simply follow an agenda
where we take one case at a time, let's start with the middle case,
and then work to the — either side.
We have a case of a patient — again, these are
generalizations and we — probably each of us are filling in the
details with mental images in different ways. We have a case of a
patient with moderate dementia unable to understand or remember why it
is that what happens as a result of this intervention is happening to
them. And the question is: might the family, under those
circumstances, refuse major surgery or chemotherapy for such a
patient? And, if so, how would you justify it, or why or why not?
Jim, on the merits, or do you want to change the procedure?
PROF. WILSON: I don't want to change the procedure. I
just want a brief introduction from one of our physicians here. Would
somebody try to explain to me briefly the differences between mild,
moderate, and advanced dementia?
DR. FOSTER: I think that's largely subjective. I
don't — I don't think that there are any defined,
you know, rules like a DSM, you know, that you detest so much over
there, Paul. I don't —
DR. McHUGH: I think there are real differences.
DR. FOSTER: Well, yes, I think there are real differences.
I mean, they are trying to describe this subjectively. The first
case can enjoy things, and the other one can't remember anything,
and the other is very — I mean, so they're just —
it's just broad sweeps I think. I don't know. Paul may
want to comment on —
CHAIRMAN KASS: We had criteria — remember, was it Geri
Hall who was here? Her presentation? David Shenke in his book goes
through this with — in a kind of narrative and descriptive way. But
there were a list of criteria at least that the profession uses to more
or less categorize people knowing that the boundaries are entirely
gray. Is that —
DR. McHUGH: Well, it's a graded phenomenon. But if
you took a disease like Alzheimer's Disease, there's no
question it falls into three stages. The first stage, in which
fundamentally the major problem is simply memory impairment, an
inability to form new memories even though old memories and old habits
and style and those kinds of things are fully intact, and the person is
quite able to enjoy things.
The second phase that comes after about three, three and a
half years into Alzheimer's Disease, is a phase that begins with a
gradual loss of language capacities for some and apraxic problems; that
is, the ability to kind of dress yourself and do those things,
depending upon which hemisphere has the dominant affliction.
And associated with that is an advancing aphasia, language
problem, or an advancing inability to use your arms/hands
appropriately, and sometimes with it hallucinatory and delusional
experiences, which are very, very distressing for the patient. But,
again, they often can enjoy things and obviously can continue to
And then, the third phase is a phase of progressive paralysis,
a total absence of essentially capacities of understanding, the
development of Kluver-Bucy Syndrome, where people are putting everything
into their mouths and fundamentally are bedridden and twisted into
a spastic paralysis state.
So, and those three big stages. And the Mini Mental Status
Examination, which we wrote and now is the standard for the following
of the decline of cognitive powers, would split it up into having the
total Mini Mental score — the perfect one is 30. In sort of the first
stage the patient runs somewhere around down to 20. In the second
stage, they run down to about 12. In the third stage, they're 11
CHAIRMAN KASS: Anything else before we tackle this?
Granted, it's hardly — I mean, it's a barebones case.
DR. GAZZANIGA: It might be an interesting exercise to
CHAIRMAN KASS: Please.
DR. GAZZANIGA: — before those of us who are charged with
dealing with these patient situations, to have our two physicians say
what, in their experience, is their practice given — to start off
with, on each of these cases. So if you want to take the second case
first, and that was your patient, how would that play out at
Southwestern? How would that play out at Hopkins? How would it play
out with an internist? How would it play out with a psychiatrist? As
a place to start.
CHAIRMAN KASS: Excellent, if they're willing. Paul,
would you start?
DR. McHUGH: Yes. And that's a good — that's a
good approach. By the way, though, I have to have a preamble —
CHAIRMAN KASS: Professors always do.
DR. McHUGH: — before I —
CHAIRMAN KASS: That's your privilege.
DR. McHUGH: The major problem for most of us, and for most
onlookers, is that you don't — that we don't offer to patients
with dementia and with Alzheimer's Disease in particular optimum
care. Nursing homes are fundamentally psychiatric hospitals, it turns
out, but you can't call them that because if you call them that
then they don't get appropriate Medicare services.
But they are psychiatric hospitals, and they should have
all the kinds of things that go into a psychiatric hospital, not only
full evaluations but occupational therapy, social work, family work,
and the like, and ultimately the implementation of a — the least
restrictive environment that a person can live in.
And when Alzheimer patients live in such environments,
everybody comes to appreciate how much they are enjoying life, how much
they get from life, and things of that sort. So that even in the
categories that I was laying out for you, much would depend upon
whether this person was fundamentally being warehoused in some nursing
home that just did think of themselves as a repository for the
demented, or whether they were living in the appropriate kinds of
Alzheimer services that lots of us are trying to build and demonstrate
that they are not beyond the powers of a reasonably prosperous country.
So a lot of that will determine a little bit about the way
you look at these things. But, you know, each one of them is
progressively more problematic, obviously.
Now, for me, you know, I do everything, but with — with
explanations and work and appreciation with the family. Oral
antibiotics for somebody with mild dementia — I give it all the time,
and I explain to people that, of course, I'm going to give this,
and I tell my patients who worry a little bit about what I'm going
to do, I say, "Don't worry, I'm going to be there with
you. We're going to get you through these various things.
It's not as bad as you think," and all of that.
The second one in which you think that you have a person,
say, in the second phase of Alzheimer's Disease where they are
prone to delusions and hallucinations, and the like, the issue of,
well, would you go in and — let's say, because he as well suffered
from Hepatitis C, had developed a hepatoma with metastases, would you
go in and take his liver out, give him a liver transplant, replace the
invaded inferior vena cava, and the like? Would you do that to him and
expect him to really make it and get through and understand it? You
If, on the other hand, the person had a leukemia or a blood
dyscrasia for which a short period of chemotherapy would be successful
and might, again, give him a few more years of the life that was —
everyone agreed he was enjoying, well, then, you would do that.
When it comes down to the last one, where it says when and
where you put a gastric tube in, then you begin to wonder how much
you're making this person suffer from the tube and from the fluids
that you're going to give them. And I probably would say at that
point I wouldn't do a gastrostomy or put a tube in, but I might try
to work with intravenous, recognizing that we're close to
Ultimately, this all comes back to my discussions with —
that you've heard me say before, and the like, that I think that
when you take on a patient with Alzheimer's Disease or other forms
of dementia, you are taking a contract with that patient to fight for
him against this enemy, this disease. You and the patient have
decided, we're going to work against this.
And we know that this is ultimately going to be a
victorious enemy, but we're going to fight as long as we can. But
we're also going to agree that there's a point where we're
going to surrender. And my concern is that we betray the patient
rather than surrender too early.
So being with the patient, having them know who you are,
having them work for the best kind of environments that they can get
with, and eventually surrendering, is my practice in general, and in
these specifics would inform the decisions that I was making.
What do you think?
DR. FOSTER: Well, I don't think that we're too
different from this. I would use a generalization that — in the first
two cases that we — where medical procedures are indicated, that we
would carry out the medical procedures regardless of the status of the
dementia, taking into consideration — for example, if we took your
case of Hepatitis with a hepatocellular carcinoma, well, the survival
rate of that is so low that you wouldn't do it.
It would have to mean that the intervention had some
reasonable effect on allowing the patient to continue the sort of life
that the patient had. So that we would not — we would not back off,
or really would not honor a family's position, I mean, once they —
they came into this. I guess we have to have permission to operate, if
we did it, or chemotherapy. But, I mean, we would try to argue that.
The third case of feeding is much more optional. If you
are near the end stage there, then that's not really a medical
procedure. That's a nutritional procedure that you're — that
one is talking about. And there one would make a decision in several
For example, if the patient was not wasted — that is to
say, that if the person had adipose tissue on, lots of stored fuel, I
mean, and most people in the country these days have lots of stored
fuel, they don't need any calories to be fed anything, so it's
only a matter of maintaining fluid, which could be done by a tube or
Now, but that's not a medical — that's really not
a medical problem. We'd have to go — go back to the other issues
along this. I would say that the — that for people who want to die
for — you know, who are of their right mind and they want to die
because of terrible diseases, and so forth, that starvation is a very
good way to go.
Our former — used to be the former head of the
Pharmacology Department at Yale, and was our Graduate School Dean, had
ALS. And towards the end — I wasn't originally his — didn't
take care of him, but I took care of him at home, and so forth, and
I'll never forget that he — he was perfectly bright, and so
But I got home from church one Sunday, and his wife called
me and he could just barely speak, that she could read his lips, and he
said, "Tell Dan Foster I'm going to die," you know, and
so he chose the way to die was not to eat, because if you don't eat
any calories what happens is that you lose hunger. I don't want to
get too technical, but you get accumulating in the blood what we call
ketone bodies, and ketone bodies stop the hunger drive that's
present in the hypothalamus there, and so it's a very peaceful way
If you don't give fluids, it's not going to last
too long. If it's just — if you're giving fluids, it's
going to last longer, because you then have to use up all of the
calories that you've got stored in fat, you know, so that's a
long procedure to do that.
So I would think that I would not have concern if the —
and my judgment concurred with the family's judgment that this was
not a meaningful life, that this would be a peaceful way to go, in
contrast to, you know, shooting somebody with, you know, potassium or
something like that that we're talking about.
So I think we'd be in agreement. I would — we would
treat both things, and it becomes even stronger if the mental
retardation is at a young age, you know, where you don't —
let's say you've got a Down's Syndrome that you have —
have this. Well, you know, that would just be unthinkable to not give
therapy there; it's different.
So I don't know whether that's clear, what I'm
saying. I think it —
DR. McHUGH: But I —
DR. FOSTER: I think Paul and I are pretty much agreeable
to most of these —
DR. McHUGH: But I think what you've seen in action
here is a kind of conversation that would take place between a good
internist and perhaps a good neuropsychiatrist caring for the people.
We would talk back and forth exactly in this way, understanding what
we're trying to do, weighing — because we would be on the
patient's side and thinking in terms of what we were doing for him
or her in this process.
And these ideas that Dan has brought out, and showing you
what he appreciates and knows about these matters, would obviously
enrich any actions that were being planned by the neuropsychiatrist.
CHAIRMAN KASS: Does someone want to join either of these
two beginnings? Well, then, let me do it. I'm sorry. Peter?
Peter, would you turn on the —
DR. LAWLER: It seems to me in the first case that it
should simply be illegal to refuse the antibiotics. There should be,
and I'm sure there is, legal protection. In the second and third
cases, they regard prudential judgments, which I think are beyond the
law, because chemotherapy, well, kind of depends.
If it's a relatively light dose, but if it's a most
— I've seen people with the most horrible kinds of chemotherapy,
where I think you might withhold that for the reason that if you
yourself, as a competent human being who didn't have all that long
to live, were offered the possibility of chemotherapy, that would be a
judgment you would make. You might turn it down, or you might have it.
So someone who is — can't think for him or herself,
someone has to make this judgment for them, and certainly you two seem
very reasonable. The presumption would be in favor of the treatment, I
agree completely. But I don't think it should be necessarily
something — a legal matter necessarily, because of the great amount of
prudence there, although I would be very much in favor of the
presumption of treatment.
But, number one, I think it's a matter of the rights of
the human being. Number two, not so much. Number three, again,
it's a prudential judgment right. They require many factors to be
considered, if someone is going to die soon, who is severely demented
and is going to die soon anyway.
So in the discussion this morning I was a little bit taken
aback because the word "rights" is — in this best interest
thing, I think there's a danger that the word "rights"
never come into play at all.
For example, someone who is the example Gil gave us, a baby
who is retarded, I think it's a matter of rights that if there is a
relatively routine operation that would allow that baby to live, the
baby has the operation. It's not a matter of anyone's
prudence. It's a matter of legal right.
So one thing we have to talk about is people, babies,
people who are demented, and so forth, is this best interest thing I
generally agree with, but there are limits to it, and the limits are
the rights of the being involved. I think we can get so caught up in
prudence our rights disappears on us altogether.
I'm all for jettisoning autonomy as fundamentally an
evil, unempirical word. But I'm not so — I think maybe the danger
of best interest talk is we jettison rights altogether, because I think
in the first case here it would be — it should be simply illegal to
withhold treatment. Like for the baby who is retarded, it should be
simply illegal to withhold routine treatment that would allow that baby
DR. FOSTER: Let me just respond. You know, there actually
are not legal rules about — of using antibiotics or not using.
That's left to the discretion of the physician. And also, the use
of a drug and something is not approved by FDA is at the discretion.
The remedy for that, if a person does not follow high quality, is
actually vested in the courts from malpractice, and so forth.
But there are no — there are not — you know, I mean,
there are certain things you can't give narcotics, you know,
without — and so forth. But by and large, it's left to that, and
sometimes because we overuse so many antibiotics, and so forth, if it
was just a mild, you know, illness we just might, as a matter of
practice, say, you know, they've got a cold and we're not going
to give them anything.
So I just wanted to say I don't — you know, it's
not — I agree in principle with everything that you've said here,
but there's not a — you know, it's not a governmental list of
things that you can't —
DR. LAWLER: Right. But malpractice is a law, though,
right? You should be up on charges if you let that go. And if anyone
notices this, the person should try to bring you up on charges. Not
that you would ever do anything of this nature.
So, number one, it would be withholding of the antibiotics,
or whatever, with the intention that the patient die as a result, not
as a prudential medical judgment.
CHAIRMAN KASS: Well, I mean, now there are several people
to bother, starting with Peter. I mean, you'll recall that in
Eric's paper — and it consumed a lot of our discussion last time
— was precisely such a case where you didn't have the surrogate
decisionmaker, but the question was thinking it through for a person
competent to refuse.
And there was some discussion as to whether one was going
to describe such refusal as opting to live a certain way while dying.
And a position I took, and was challenged by Charles amongst others,
say, "That's just subterfuge. This really is a choice to
elect death by this means now rather than linger on with the
other." And there is a tacit sort of quality of life
consideration that's there.
Even Dan, in his last remark — and by the way, I liked the
comments, and I would happily place myself or anybody I loved in the
care of both of these gentlemen — so I didn't dissent from things
that were said. But even in the very last comment that Dan made,
talked about that there's not much meaningful life here, and when
— the question was, whether there are these objective standards or
values came up this morning, and Carl Schneider said, "Well, it
all depends upon what they are."
Once you introduce the notion of the meaningfulness of
life, then it's not clear to me that the judgment of that is the
physician who is committed to making war on Alzheimer's Disease has
the best perspective on what it means to live with that disease.
So I'm going to use that as a transition to go back to
— to Paul. You are committed because you have a certain view of the
worth of every human life, no matter how reduced. You have a view of
what your obligations as a physician are. But I'm the spouse of
this woman who has this terrible disease now, and let's put her in
this immediate middle sort of condition, and you and I both know
Do you want me to stop?
DR. GAZZANIGA: No. I'm going to answer your question.
CHAIRMAN KASS: Oh, okay. Good.
And I say, "Look, we've talked about this for a
long time. I know what she values about life. I know what she thinks
about her relation to her children. I know what kind of memory she
would like them to be left with."
And I'm going to take a slight variation here on the
case that Rebecca has given us, because chemotherapy — Rebecca has
made it somewhat easy by saying the patient can't understand the
restrictions or the physical discomfort that you're going to — we
are going to subject her to by virtue of being — acting in her best
But let's say she has a Stokes-Adams episode or
something like that, and it's up to you and me to decide whether to
put a pacemaker in. And then I say to myself, you know what, if she
didn't have the misfortune to be in our clutches, medically
speaking, this might be a good way out. I'm not wishing it.
I'm not trying to arrange for it. It happened.
But we've now got a kind of new situation, which I want
to say to you, you know what you're doing, Paul? You're a good
man, you're a good doctor, I like your values, you're going to
make sure that people are not taken advantage of. But in these
circumstances, with this patient, you are, in a way, choosing not only
to fight the disease but to make sure that the patient lives to suffer
every last vestige of degradation that this disease is going to prove.
And I know my spouse, and she would hate me for acquiescing in that.
PROF. GLENDON: What's Stokes-Adams?
CHAIRMAN KASS: Just a heart block —
DR. FOSTER: It's a loss of consciousness secondary to
obstruction to the aorta.
CHAIRMAN KASS: It's a brief arrhythmia of the heart
which relieves itself, and for which the treatment is a relatively easy
procedure. You put a pacemaker in and a battery, and you can prevent
it by and large from happening, unless — I'm all right so far,
Dan, on — I'm okay?
Now, maybe Mike wants to solve this.
DR. GAZZANIGA: Well, this gives you time to think, Paul,
so I'll take a shot at it. No, it's the exact middle ground
question that is the harder one. And so let me propose that what's
emerging out of modern neuroscience, modern human neuroscience, are
some remarkable findings that basically allow us to capture, using
neuroimaging, whether someone in fact has a sense of self.
And so just to make it concrete, there are little tests
that one can develop where you can see whether — I mean, it's a
fact that if I give you things to remember that have self-reference to
you versus reference to others, the ones that have self-reference to
you are remembered better by you.
And these tests — and there are many, many of them like
that — light up specific networks in the brain. So one could imagine
that you could take this profile, this new profile — before you're
going to make this decision, your spouse has been worked up on these
tests, which are going to show whether, in fact, any of the
self-referential aspects of life are active, are working. I mean,
it's just going through. There's no spark, there's no
individual recognition, there's no evidence — and behaviorally, of
course, that is apparent.
But if that sort of biomedical aspect was brought to the
table in this decision, would it not — and I don't know the answer
to this. I don't know what my position on it is. But would it not
add to the information people would want in trying to make this
decision that this person simply no longer has active the neural
networks that we know are crucial for recognizing new information
related to the self versus others? They're not there. They're
CHAIRMAN KASS: You want that to count more than whether
she smiles at me when I'm in the room?
DR. GAZZANIGA: Those, as we all know, are tremendous —
can be tremendous automatisms — automatic behaviors that are greatly
fulfilling to you but have absolutely no meaning to the patient.
That's all we —
CHAIRMAN KASS: But that's why — that's the point
of introducing this.
DR. GAZZANIGA: Yes, that's the heartache of the whole
DR. FOSTER: I have a quick question. In practice, I mean,
to do that sort of imaging on everybody who is in this condition is
going to bankrupt the country, right? I mean, is what you would learn
from that worth what the cost would be from, let's say, functional
MRI or whatever you're talking about?
DR. GAZZANIGA: Well, it just changes the flow of money.
It's the same dollar. It's just, you know, where
it floats through.
I mean, the fact of the matter is we're an affluent
country. There are people who would get the service, people who
wouldn't. So that — that point aside, I know that's a very
complex issue. But I'm just trying to think ahead to — I'm
seeing what's in the tube here in terms of the neural networks that
are going to be worked out.
And someone is obviously going to say, well, should we apply these
questions to the demented population to see if we should withhold
medical care? I mean, that's the only reason. I mean, that's
the only objective here. But I don't know. I don't know
if it's a good idea or a bad idea at this point.
CHAIRMAN KASS: You've had time to think.
DR. McHUGH: Well, no. I want — again, the real problem
with these hypothetical questions is you can build a pig with wings,
you know, and does it fly, or doesn't it fly, and how would you
work with it? And, you know, then I come back with other kinds of
aspects of the hypothetical, well, you know, how has this person been
doing? How has she or he been enjoying the life that he's had so
far up 'til now? What was the original deal that we had together
when we decided to engage in this battle? And the like.
And most of the time I think that in these things the
family turns out to, once again, follow the judgment of the doctor.
You said that, "I wanted to fight to the — into the third phase
of Alzheimer's Disease," or something of that sort.
That's not necessarily true. I might be prepared to surrender at
an earlier time if things turned up.
But then you have to then — because you make this so
personal, it becomes personal with me. And, you know, I've watched
the lights go out a lot, and let me just tell you it's — Dan will
corroborate — it's not happy when the lights go out, and you
don't like it, and nobody likes it.
And sometimes in certain situations, even though you have
agreed that you're going to do one thing, at the moment you
don't do one thing. And I — I've gone over these stories
before with this Council, so I won't bring my war stories back to
But for the most part, it seems to me in the situation that
you put forward that if the doctor to whom you had entrusted this
battle with, and whom had not only a relationship with you but a
relationship with the patient after all because he has seen him or her
since the beginning of this, that you and he — you might defer to his
judgment, particularly if you came to agree that there were things that
ultimately other than simply turning into a pretzel would — would get
you — get the surrender to occur.
Now, but if you push your argument all the way to me and
say, "Look, Paul, I want this done this way, and you want this
done that way," given the social situation that we have, you
dismiss me and take your patient home, and take care of her and you
become the person. And no longer am I — no longer am I the
doctor/clinician in this situation.
I am not a waiter. I don't bring you a menu. I don't
— I bring you a prescription. I explain — I know I'm
going on too long. But this is what I do. I bring a prescription
that's based on my knowledge of you, the situation, the condition
that we're in front of. I want us to agree that this is going
to be a 24/7 concern, I'm going to be thinking about, as you're
going to be thinking about it — all the way. We're going
to take these judgments into account, but I'm going to do the
CHAIRMAN KASS: With the Council's permission, may
I go one more — one more round briefly to see if we can —
this is not a question of who has ultimate authority. It was really
a question to your own thinking and how — it was, in a way,
to wonder to what extent — and you partly gave — gave
satisfaction in the course of that discussion where you say —
when you say to the patient at the beginning, and it sounds like
the tacit contract, "I'm with you through this disease
thick and thin. We're going to fight it together."
That might be a very short conversation, or it might be a
very long conversation in which the details of when we move from battle
to surrender. And it might be different in different patients. I
mean, you've indicated that in this reaction.
But it — I wonder whether it ever occurs to you as the
physician in charge that you are, whether you know it or not, selecting
this kind of death rather than that kind of a death for a patient, and
whether that — whether these kinds of situations that Rebecca has
elaborated for us don't somehow force that question in a way that
it doesn't usually occur where you've got a sick person who
comes for relief, you know they want to get well, you know they're
going to be restored to their life, and the question is: what's
the most effective means to it?
We want to say — I think the group — so far no one
in here has argued, so far, that we really want to say that the
line between maybe allowing to die and deliberating killing should
be fudged. I think no one has dissented from the principle Eric
laid down last time that there should not be an action which deliberately
intends the death, elaborated by Robby and others.
But the questions about withholding for various kinds of reasons, without
death being the simple choice, is a much more common decision than
the circumstances that invite thoughts about assisted suicide and
euthanasia. And it seems to me that these kinds of cases in the
middle are such, and we're trying to tease out the question
of: where one is in the presence of the kind of incompetence that,
let's say, Alzheimer's, produces, especially in the advanced
stages, to what extent that very condition and the life that the
patient has is part of your consideration about intervening.
So far you and Dan have said, for the most part, not. Dan said
it quite explicitly. The mental defect is no part of the consideration.
If it's medically indicated, it's medically indicated. The
last thing becomes optional, because it's not medical but nutritional.
And that, in fact, not doing so doesn't produce a painful death
But I'm wondering whether it's too narrow to take a
merely medical view of the kind of life that you are helping to sustain
when you've got people who, if you act the way you normally act,
you are, in effect, consigning them predictably to a kind of increased
I'm not arguing the opposite position, but I'd like
to hear how you — how you would deal with a patient who has thought
about this a lot, and who says, "Look, there is more here than
just the body. There is the life that this person had led and the
relation to the children and the grandchildren, and I know what this
person would like. I know that the point of surrender for her would be
a lot earlier than it would be for you or even for me."
And the best interests of this patient — of this patient
might, in fact, permit one to forego treatment that the presumption,
generally speaking, would be in favor of making. And I think I spit
that out tolerably well.
DR. FOSTER: Let me try to answer this. I mean, you know,
all moral or ethical questions that are serious are gray. Okay?
They're not black and white. And most of the time the issues are
not that complicated, and a prudential answer in the Aristotelian sense
is just a common sense answer almost everybody will agree on.
So I'm not — if I'm taking care of you or Amy or
something like that, and it looks like, you know, the Leon Kass that I
used to know is — is not the same person, and that I know you
don't want to be, you know, you're not going to find me
fighting or Paul fighting to do that.
If it's — I mean, it's pretty — it's not real
hard, unless you have some mystical view that — that even though death
is very near, that that — that every speck of sustained life has to be
sustained to the last point, that's what you're arguing about.
Nobody wants to do that at all. All we're trying to say — he uses
the term "surrender."
You know, I mean, I — oftentimes, you know, we say, well,
we're not going to do this. It's not — in the first place,
it's not medically indicated, and so forth. So most of the time
you don't — in big-city hospitals, which is where I work, I mean,
we don't usually need ethics committees, and so forth. I mean,
these are — and they're not paralyzing things.
I mean, occasionally they're paralyzing, but most of the time
they're common sense that any — you know, you take 100
laypersons and show them — the person there, to look at them,
and give them the facts, and they would almost always opt along
the same line that the family or the physician want to do.
So I don't want to build this up as though this is some
sort of a huge emotional problem. Most of the time it isn't. It
will be if somebody feels radically that you have to sustain life to
the very — you know, to the very end. But day to day you don't
see that, and most of the time it comes when there's a conflict
within the family, where — you know, where a brother wants to do one
thing and a sister wants to do the other. We can't kill mom, you
know. Well, we're not killing; we're just not going to give
her the chemotherapy, whatever.
I hope that's clear, what I'm trying to see here.
DR. McHUGH: Well, and I want to kind of back that up, too,
because that's exactly what usually happens. It's a gradual
process of understanding where we are, and we want the family, like Jim
said he and his sister were, coming together about what these
implications are and things move fairly smoothly.
The reason that I awoke to this idea of the Stokes-Adams, a
sudden event, is that I've been in those situations when the
promises that I had made, even I had made, I didn't carry out at
that moment. I might have mentioned this case before, but this was a
case of a patient that I was taking care of who had advanced COPD; that
is, difficulty in respiratory things. And she as well had, as often is
the case, serious psychological problems with it.
Now, I liked her very much, and I admired her husband and
her family. I knew them. I thought the world of them. And the one
thing they had said is, and she had said to me is, "Don't put
me on a respirator." I said, "Don't worry. That will be
Well, this day she was with me on the psychiatric floor,
and we were working on her emotional anxiety reactions. And she just
started to go right then, completely unexpected, her husband wasn't
in town, nobody was there — just me, the resident, and her. And it
was like watching somebody carried out in the undertow, and I reached
out, I got the code people, and I put the respirator on her.
That evening I went out thinking, holy cow, what have I
done? I've done all the things that are against what I wanted to
do. I had dinner with the Humanities Group at Hopkins, who I agonized
— agonizingly told this little story to. And I was savagely abused as
a dirty rat, and I should have let her die. Thanks a lot, fellows.
And then, the next day I came back, she was in the care
unit and things. Her husband said — I said, "Gee, I'm
so" — he said, "I think you did the right thing." I
said I — and I went, "The respirator, I think we can get her
off. I think we can get her off. It's going to take about three
days to a week. We can get her off." And each day I would go and
hold her hand, rub her shoulder, you know, "It's going to be
okay." And we got her off.
And when we got her off, it was clear now that everybody
had now come to town, the children and everything. She was very
precarious, and we all agreed now that was it. We had done it, but we
weren't going to do it. And in the next two weeks she slipped
away, and everybody, including me, was pleased that I had reached for
her at that moment.
Now, to come to your case, is the Stokes-Adams thing a
sudden — well, I think if that happened right then, I was watching, I
know I — I know what I'd do. You just see them going, and you
can't stop. Then, after that, we could talk and all of us would be
saying, "Okay. This is not just a one-time event. This is going
to happen and maybe — let's decide whether we are going to put a
pacemaker in, or maybe we won't." And then, we would work it
that way. Okay?
PROF. WILSON: Could I — what do you think of your
colleagues in the Humanities Department who would attack you for having
DR. McHUGH: I just felt that — Jim, I just felt that they
were part of the contemporary theory that, you know, autonomy is
everything, the no sense of the community of which a doctor is a part,
the relationship you have to somebody. I just — well, I was zipped,
of course, with them at the end, and I told my wife, "We're
not going to have dinner with those people ever again."
PROF. WILSON: Come over and have dinner with me. I
won't treat you that way.
DR. FOSTER: A difference — the reason that you did I
think absolutely the right thing is that she was not at the edge of
life from her chronic obstructive lung disease. And, therefore, this
was a new thing, and she might have had six months or a year of good —
relatively good quality of life. So it was — your physician's
instinct was absolutely correct here.
That might have been absolutely incorrect if this was case
three who was lying there, you know, with nothing at all for you to
intervene when, you know, your — so it's a different —
DR. McHUGH: I just wanted to answer Leon's question in
DR. FOSTER: It didn't negate your — what you had
committed to do or anything else, because there was a new element that
had entered into it, where you had to respond knowing that she might
have — now she only lived two weeks afterwards, so it was close. But
a lot of times they're going to live for — so I'm saying, with
Jim, that you got attacked in the wrong way for this one. Okay.
CHAIRMAN KASS: I have Gil, and then Peter, then Charles,
in that order.
PROF. MEILAENDER: I think this is becoming altogether too
And I'd like to change that. First — I have several
different comments. First, a comment on cases two and three as Rebecca
has them here, not your reformulated one, which I'll come to.
I myself am inclined to think it easier to acquiesce in a
family refusal in case two than case three. In case two, at least in
many circumstances, there might be some reason to believe that the
patient found the treatment burdensome and was bothered by it in
various ways, and it could not be explained to that person.
And I would be inclined to take those sorts of reasons
seriously. I mean, I don't know if they're definitive in every
case, but they'd certainly be powerful, and I wouldn't
necessarily argue against them.
Case three, I think there was a kind of assumption in our
discussion of it that this person was about to die, but I take it a
person can be in an advanced state of dementia and live for — for some
time. And if that's the case, it's not clear to me that there
is some reason in the best interest of this patient not to feed them.
You'll notice that it's also not clear to Rebecca,
who says, "Although this option may not be covered by a narrow
concept of the patient's best interest, it's often
defended," etcetera, so that it's — I think in some respects
it's harder to make a general case for refusing in the third
instance than in the second that she cites. So that's one comment
A second one — Leon, you said that no one here had fudged
the distinction between allowing to die and deliberately killing. I
don't think that's quite true. I think you have fudged it. in
your discussion of — your reformulated case two, which I grant you is
a different sort of case, but you'll recall that your — what you
were going to say to, Paul, your doctor there, was that we know
what's coming. That is to say, what's coming is a period of
time, a period of life, that we don't find very desirable, and
would prefer not to — not to go through.
CHAIRMAN KASS: That's an understatement.
PROF. MEILAENDER: Yes, I understand that. Which is to
say, what you're saying is, so we will seize the occasion presented
us here to — to decline to treat, so that she'll die now
rather than at some other point. That is to say, we'll seize
the occasion to get this death right now.
Now, I want to notice that one could say exactly the same
thing in case one with respect to the antibiotic. There, too, we know
what's coming, even though the person is in a mildly demented
state. And we don't find what's coming desirable, so we might
well seize the occasion there also to — to see to it that that
So although I understand the — at least I hope I
understand the difficulties of the kind of case you're talking
about, I think that it's, at least in morality, much trickier in
law I would certainly grant, but at least in morality there are
certainly instances in which one can aim at someone's death by not
doing something, or by withdrawing a treatment.
CHAIRMAN KASS: Gil? Just a tiny point, just a very tiny
PROF. MEILAENDER: I've waited patiently.
CHAIRMAN KASS: Okay.
PROF. MEILAENDER: And my third point would be, if
we're talking about boundaries, it seems to me that the furthest
boundaries that we ought to set is to say that we ought never aim at
someone's death. We ought never deliberately aim at it, and we
ought never make judgments about the comparative worth of other
Now, it will be hard to know how to apply those boundaries
in various cases. They will leave room for all sorts of latitude in a
lot of circumstances. But that, it seems to me, is where we ought to
So now you can make your corrections, Leon.
CHAIRMAN KASS: Just a point of information, and then I —
I really don't want to argue it. I agreed — the case of the
immediate fainting episode is very much like the patient — Paul's
patient who turns — who stops breathing. My question was: do you
then put the pacemaker in? That's not somehow choosing death right
now. That's choosing to roll the dice on a cardiac death rather
than a long, lingering death from Alzheimer's.
And that, it seems to me, is not choosing death for the
patient, but recognizing that I'm — by putting in a pacemaker,
I'm in a way complicit in the very likely prognosis here. And we
don't know whether there's going to be another episode, whether
it's going to be lethal.
The immediate episode, someone drops — stops breathing in
front of me, I resuscitate them until I know otherwise. So that was —
it was just a factual difference, and, therefore, I don't think
it's a case of electing death.
PROF. MEILAENDER: I'd feel more comfortable about that
answer if it were not for your formulation about we know what's
coming. It seems to me that that does imply certain kinds of judgments
CHAIRMAN KASS: Thanks for your indulgence, Peter.
DR. LAWLER: All right. I first want to say, case three,
read the way Gil read it, he's right. Case three is not really
fleshed out enough to be read at all, I guess. It's really
But I think I agree with Gil on — on Leon, too, being a
little bit overwrought or Nietzschean about all of this or something.
For example, if you yourself have some horrible disease that has just
started up, and you know what's coming, but meanwhile you need a
pacemaker to get through the day, you can turn down the pacemaker, if
you want, as a competent human being. And we can divide up into small
groups and argue whether you're courageous or wimpish about that.
But when you're deciding for someone who is moderately
demented, it's quite different. I think you would have to go with
a pacemaker; it's a simple procedure. And all your talk about
"given the life this person led" — . , this person, as
Rebecca points out so eloquently in her second article, this person is
not living that life right now.
She points out people with Alzheimer's are a lot
happier than they ought to be, given what's coming and everything.
So you're kind of imposing that person's, you know, kind of
autonomous framework or something on the person's present being,
which is really quite different and not nearly so anguished as your
view of that person's present being.
So from my point of view, putting the pacemaker in, which I
guess does not hurt very much and is relatively routine, would not be
— especially in light of what's coming, would not be a close call
at all, and shouldn't be regarded as a close call.
CHAIRMAN KASS: Charles?
DR. KRAUTHAMMER: First, to answer Jim Wilson's
question about how Paul felt at the Humanities dinner, I think the
appropriate answer would have been to go to Medical Records, pull the
chart of every member of that group, and write in "DNR."
Poetic justice for them.
CHAIRMAN KASS: Do you want this on the record, Charles?
DR. KRAUTHAMMER: Absolutely, yes.
I've written a lot worse.
In answer to Gil's point, I think your trouble was with
Leon saying, "We know what's coming." What if he had
said, "We know where you are"? In other words, what if the
criterion for the heroic intervention, or semi-heroic, or intervening
at a point where it looked as if nature was going to act as the
undertow, to quote Paul?
What if the criterion were not what's coming but the
state that you're in? And what if I were to propose that the
decision you'd make is whether the person, in their present
condition, were relatively happy or comfortable if unpleasant — in an
unpleasant situation versus whether the person was either suffering or
That's not a projection of what's happening in the
future. It would be an assessment of where they are now. And I think
you could make a reasonable argument for making a decision about
intervention of the kind Leon was discussing on the grounds of
suffering and degradation — again, assuming that you're not —
you're acting in what you perceive as the best interest of the
person rather than a subjective projection of what that person would
want, assuming we'd really have no idea what that person would
I think we can promulgate reasonable rules. What I would
like to suggest is that we ought to promulgate the rules with the
understanding that there will be very little sanction for those who
transgress. For example, the bright line rule that Leon had suggested
earlier, you don't kill, but under certain circumstances you
withdraw treatment, which is exactly how we conduct medicine in the
real world all the time.
I think there's a very bright line, and yet we know
that we have a rule of secondary effect in which you'll give an
overdose or a high dose of morphine to treat pain, knowing that it may
have an effect, or it will likely have an effect of killing a patient.
I'm not sure any of us — at least in law as I understand it,
it's permitted. I'm not sure that ethicly it ought to be not
In other words, even the bright lines that most of us
accept I think we also accept with the understanding that given the
individuality of every case that it is impossible to make rules that
are universal, and that we ought to have a high tolerance of those who
will transgress them in particular circumstances.
CHAIRMAN KASS: Do you want to respond, Gil?
PROF. MEILAENDER: Just very briefly in terms of your
question about, what if we simply asked what the person's current
state is? I mean, I think that's a good and a perfectly reasonable
question to ask.
But I believe, at least the formulation that I tend to use,
that I would want to use in reply, is that I would say that I would
want my decisions about what I did for that person to be based on
whether there was anything I could do to benefit the life that person
had, not on a decision about whether having that particular life was
itself a benefit.
So I'm perfectly happy to think about their current
condition, but even then I'm not prepared to make a judgment that
they have a life that is itself not worth living.
DR. KRAUTHAMMER: Well, the word "worth" I think
is — is — it complicates, and I think it distorts. If I'm in the
presence of a loved one who is suffering and demented and can't act
on their own, and the Leon event occurs, the Stokes-Adams attack
occurs, I would be inclined to do nothing to end the suffering.
It's not a judgment on the quality of life. It's a
judgment on whether — whether — it's not a judgment on whether
it's a life worth living, that it's a matter of worth, it's
a matter of humane fellow sympathy. Would I want that — do I believe
that a person ought to continue to suffer, which would happen if I were
to rescue that person or not?
So I don't look — it's not as if — if you have a
patient who's not suffering, but is incompetent, is essentially out
of touch, I think that's a question of the value of life. In the
question of suffering, I think it's different. It's not a
question of worth; it's a question of the subjective experience.
CHAIRMAN KASS: Well, let's stay with this exchange —
I think this is fruitful — if Gil — if you and Charles would go one
PROF. MEILAENDER: Well, just a sentence in reply.
Obviously, I would — at least I would hope I would want to do whatever
I could to relieve the suffering that that person was undergoing. But
I would not want to try to eliminate the suffering by eliminating the
And there again, you see the question is whether what
I'm taking aim at is the suffering or whether what I'm taking
aim at is the person's life. That's just another way of coming
back to my same formulation, I realize, but that seems to me at least
to be the boundary-making distinction within which, then, I want to
leave as much latitude as I can for trying to make a whole range of
decisions, and perhaps even for having people make different kinds of
DR. KRAUTHAMMER: Well, then, if I could just add the one
sentence, I think it's illuminating, because you would decide on
that basis. I would decide on the basis of the other rule, which would
be that I would not actively intervene to kill under those
circumstances. However, in the presence of suffering, that was — I
was not able to alleviate otherwise, I would allow nature to take its
course in the event of a — of, say, a Stokes-Adams attack.
I think those might be two approaches of using a different
set of rules to the same person.
PROF. MEILAENDER: If I really thought that my moral
obligation under those circumstances was not to intervene, so that the
person would die and, hence, stop suffering, if that's what I
really thought, then I hope I would have the courage to intervene more
directly in order to end their suffering and not let them linger in it.
DR. KRAUTHAMMER: And I would act —
PROF. MEILAENDER: Because I don't think there's a
DR. KRAUTHAMMER: I would act exactly differently. I would
not implant the pacemaker.
CHAIRMAN KASS: Robby, are you going somewhere else, or are
you going —
PROF. GEORGE: No, I just have a question about this, and
PROF. GLENDON: I think Robby is in a state of shock over
PROF. GEORGE: Maybe puzzlement, because I'm with Gil;
I don't see the distinction in — in terms of the intention, and,
therefore, in terms of the morality of simply omitting to act or
declining to intervene with the pacemaker and shooting them in the
DR. KRAUTHAMMER: I think the reason for observing this
line, or at least promulgating it, is a prudential one. And that is
that if you don't have the line, you will end up like — well,
let's assume Holland is what we're reading about. You will end
up euthanizing people without limit.
I think the — look, we're having a discussion here in
which we don't know where to draw a line. We keep saying it's
a matter of case after case. I think a line has to be at least
promulgated, if not a legal then at least a moral line. And I think
the distinction between active and passive is clear. You're right
that ultimately in terms of intent it's hard to make a distinction,
but I think if you abolish that line then you've abolished all
restraint on the euthanasia.
But I think if you were in the presence of such a case, I
mean, it's easy to say, "Here, I would implant a
pacemaker," I'm not sure how — I'm not sure you would,
although I — if we're faced with the circumstance, I think
there's an impulse in us to say there's no reason to impose
endless suffering on — in a person in whom nature or providence has
CHAIRMAN KASS: Go ahead.
PROF. MEILAENDER: Well, I don't know how to — how to
make the point. I would rather have the rule formulated, or the —
just the boundary, the statement of the boundary, as it should never
aim at a person's death, rather than your active formulation.
I grant you that your active formulation is much more
conducive to — I mean, you could adjudicate it in a court of law, for
instance, in a way that it's very difficult to adjudicate
intention, and so forth.
But the reason I'd rather state the boundary the other
way, not simply in terms of the active/passive distinction, is that I
want us all at least to have to think about the fact that we might, on
any number of occasions, deliberately seize occasions to get someone to
die by not doing something.
I mean, I want us to have to keep that moral question in mind
at least, because, in fact, I think that at the moral level embracing
the person's death as choice-worthy there isn't different...
even though I grant you that in sort of public policy circumstances
your rule is easier to apply.
But we need — we need to continue to think about and be
faced by the fact that we might turn ourselves into people who are
eager to seize occasions to get people to go away.
DR. KRAUTHAMMER: If I could just add one thought. The
reason I would adopt it is not — the line I'm suggesting — is not
only because it's easy to adjudicate and, of course, a law, but
also because I have a sense that if I were the one who were the
sufferer, and I had an attack of this sort, I would want no one to
implant a pacemaker.
So I am generalizing in sort of an act of human sympathy,
if I can speak in those grandiose terms, from what I would want and
what I would assume — starting with what I would experience and want,
I'm assuming it would be an act of mercy on the part of anyone who
was in that circumstance to deny me a life of further suffering.
PROF. MEILAENDER: And if I were the person in case one,
with the mild dementia and in need of the antibiotic, there is
certainly a level at which I would want people not to keep me alive.
DR. KRAUTHAMMER: No, that's an easy call.
PROF. MEILAENDER: Well, no, I — just in terms of what I
would want, taking seriously Leon's comment about I know what's
coming. Okay? There is certainly a level at which that's what I
DR. KRAUTHAMMER: You could talk about a 20-year-old person
with depression and say you ought to listen to what they want.
PROF. MEILAENDER: Well, let's eliminate the
depression. Okay? Which is an underlying condition. Let's just
grant a rational deliberation.
The simple fact that I would want that doesn't settle
the question of what I ought to want someone to do, or what I ought to
do for someone else.
PROF. GEORGE: Laying aside —
DR. KRAUTHAMMER: And what decides what you ought to, if
PROF. MEILAENDER: Sound moral reasoning, which I have just
PROF. GEORGE: But have you? Since if you're right,
then — and by your being right, I mean, if it's right, if it's
accurate to describe declining to go with the pacemaker as an act of
sympathy and not an act of killing, then it would have to be also
accurate to describe injecting him with a poison, shooting him in the
head, as an act of sympathy rather than as an act of killing, even if
as a prudential matter we would want in our medical practice and in our
law to draw a distinction and to punish the latter, the active killing,
and not to punish the omission or the passive, well, act of sympathy or
whatever you want to call it.
I mean, just in terms of the truth of the matter, laying
DR. KRAUTHAMMER: But that's precisely why I'm
invoking two principles and two reasons. One is sympathy, and the
other is a prudential argument against erasing all lines and allowing
unlimited actions of this sort. Yes, if it were only sympathy, I mean,
I can even imagine a case in which someone actively overdoses a patient
in great suffering.
I'm sure it happens a lot. It's probably written
off as a double effect. It probably isn't double effect, and I
would appeal to my colleagues here as to whether I'm wrong — my
medical colleagues — as to whether I'm wrong about whether or not
this actually occurs. I'm sure it does, but you don't want it
as a rule and a principle. You want to say it ought not be done,
because once it's allowed, as in Holland, there is no end to it.
PROF. GEORGE: I do understand the prudential judgment and
the slippery slope argument.
DR. KRAUTHAMMER: Right.
PROF. GEORGE: I'm just interested right now in the
principle and the accurate description of the act.
DR. KRAUTHAMMER: If it were only a matter of sympathy,
yes, shooting would be allowed. But it isn't only a matter of
PROF. GEORGE: No, no, not whether it's allowed. I
want to know, when we shoot him, are we doing anything morally
different from what we're doing when we take advantage of the fact
that he has just had the seizure and don't intervene? Or when we
don't put in the pacemaker, though we could, without — I take it,
Leon, without great burden, right? Without an extraordinarily burden.
DR. KRAUTHAMMER: If someone is drowning and you decline to
go in and save him, is that the moral equivalent of you drowning him in
a bathtub? Is that what you're saying?
PROF. GEORGE: If the objective of my —
DR. KRAUTHAMMER: I'm simply asking those — are they
equivalent moral actions?
PROF. GEORGE: It depends on the reason for the action.
But let's assume that the reason for the action in both cases is
that he's my enemy and I want him to be dead. Then they're the
same. If it's that I can't swim and would —
DR. KRAUTHAMMER: I'm assuming you could swim.
Otherwise, it would be a lousy example.
CHAIRMAN KASS: Alfonso, go ahead.
DR. GÓMEZ-LOBO: I don't know if this helps, just a —
one more effort to articulate this. It seems to me that in cases of
active euthanasia there is a necessary connection between that and the
intention to kill. In the case of omissions, surely there can be a
connection. They can be the sympathy intention.
But I do think it's contingent. I think that there is
room for omissions such that one can engage in the omission without the
intention to kill, and that's the reason for Robby's question
In other words, in certain parts of the world I'm sure
that putting in a pacemaker is a huge investment and a big burden for
the family, etcetera, etcetera. And it seems to me that in cases like
that, a possible interpretation would be that there was no intention to
seize the occasion, that there was another reason for it.
CHAIRMAN KASS: Let me try again. Look, I'm — I'm
very friendly to the morally scrupulous and high-minded arguments of
Gil and Robby, and I'm very sensitive to the prudential worry of
what comes when you start to open this up. But I continually have this
feeling that I'm being beaten around the head by morally superior
reasoning, which flies in the face of common sense.
And so I think I know why you guys won't allow me to
say, "Fellows, look, it's a new world — this world of mass
longevity and 40 percent of it in frailty and debility." And you
can say, yes, it's true that we don't know the future, the
future is — you could be run over by a truck before you can get the
last stage of Alzheimer's Disease. But this is a progressive
disease, and in most cases it goes the way you know.
What's wrong with my saying to you — I've got two
questions for the scrupulous. One question is: why is it that you are
so quick to allow an exemption for a newly-imposed medical burden of
the treatment, which is, after all, a burden to the life of the
patient, but refuse to allow into consideration as an assessment what
should be done, the burdens that the patient is suffering, that you
haven't had? From the point of view of existence, it seems to me,
why — why make those distinctions?
Second question: why is it — am I simply perverse when I
say that there are some circumstances in whether — in which the true
decision that you're making, whether you know it or not, is not a
choice for death but a choice of which of the two paths to inevitable
death you are forcing me to take, or inclining me towards, since
there's no guarantee that I'm going to get to the end by either
of these two paths?
And, in particular, what — well, that would be, I think,
sufficient. I could make it sort of vivid — in which you
rescue or I rescue my spouse by putting in a pacemaker. And assuming
there's a next life, I can fully expect her to remonstrate with
me in saying, "What kind of superior moral reasoning justified
your condemning me to a decade of not being myself and of not having
the kind of relation to my grandchildren that I want, rather than
allowing me to live in the crap shoot of another cardiac arrest,
which would take me off?"
What answer would I give to her as a result of having been
persuaded by superior moral reasoning?
PROF. GEORGE: Well, on the latter, I think you would say
for the same reason that I didn't shoot you. Or you could — you
would have the same problem if the spouse in the afterlife said,
"Why did you condemn me to 10 years when I asked you to shoot
CHAIRMAN KASS: I think there's a real difference
here. That is to say, look, I know we live in a new world, and those
things can't be wished away. But people didn't call pneumonia
"the old man's friend" for nothing.
There are these new things — there are ways in which —
should the mere fact that I am in the clutches of a profession that can
remove all of the immediate causes of death, can deal with all of these
new episodes, enable those people to say that they will never somehow
choose death and, therefore, they're not only going to rescue me
when I fall on their doorstep — and, of course they're going to
rescue me — but they're going to set up situations in such a way
that I'm going to be compelled to live out this 15 years of
degradation, some of which — I don't want to make it only in the
future — some of which I am already suffering, and the intensity of
that suffering I can see.
I'm not somehow arguing for early surrender in every
case or in all cases. But there's something in me that resists the
claim that this sound moral reasoning has to govern here for the right
choices to be made, where you consider the full human significance of
And part of that is I don't see why you should
privilege just the fact that this operation that you're going to
give me is going to leave me with chest pain for a few weeks or the
chemotherapy is going to make me vomit for a while, when I'm
scratching myself to pieces or cursing the nurses or engaging in wild
sexual activity with the other patients in the nursing home. And
that's a terrible thing, terrible thing.
DR. KRAUTHAMMER: Could I ask Robby and Gil, are you saying
that there are no circumstances under which you would ever withhold
treatment of an incompetent patient? Is that right? Am I reading you
PROF. GEORGE: No, that's not correct, Charles. I
thought that Alfonso explained —
DR. KRAUTHAMMER: Under what circumstances would you
withhold treatment that would lead to death in a patient?
PROF. GEORGE: Where the burdensome nature of the treatment
was such that it provided an adequate reason to withhold the treatment.
DR. KRAUTHAMMER: So only if the treatment itself is worse
than the suffering already existing. So if I give you a case of an
easy treatment, you would always say that as long as that treatment, in
and of itself is not terribly suffering-inducing, there are no
circumstances under which it should ever be withheld?
PROF. GEORGE: I think there are no circumstances under
which you would want to treat the life as the burden to be removed, as
opposed to the burdens of the treatment. So if there are no burdens to
the treatment, and the only thing you're inviting me to do is to
treat the life as the burden to be removed —
DR. KRAUTHAMMER: Right.
PROF. GEORGE: — then I —
DR. KRAUTHAMMER: Then your answer is yes.
PROF. GEORGE: — say it would go with the treatment.
DR. KRAUTHAMMER: And you too, Gil? Always yes?
PROF. MEILAENDER: Yes. I have more to say than just that,
The important reason behind this is I think an attempt
precisely to — to treat human beings equally, never to make judgments
about — comparative judgments about people's lives, and it's,
of course, true, as Leon says, that he — he wants to know why we'd
be willing to refuse the burdens that come with the treatment, but not
as it were to refuse all the burdens that already may come along with a
And it's a pretty rational question; I don't — I
don't mean that it's not. But it's a question of what it
is that I'm — I'm thinking it's permissible to turn
against. And I'm not going to turn against your life. I'm
going to do whatever I can to benefit the life you have. It
doesn't mean that one must take any and all burdens that come
I think the point is that — that at different points in
life there are a different range of choices, but we all have a range of
life choices. You don't have to choose for yourself, or even
necessarily for others, always the longest life. You may choose a
shorter life free of certain burdens, for instance. That's
possible, from among those range of choices. But we — what we
don't choose for other people is death. We don't view that as
choiceworthy. So that's something of what I'd say in response
to your first claim.
With — or your first query. With respect to the second
one, I do think you have an inadequate understanding of the afterlife,
All will be forgiven at that point, and you don't have
to — you don't have to worry that you'll be under attack in
CHAIRMAN KASS: I'm looking forward to the judgment.
PROF. MEILAENDER: But there are always — I mean, it's
true that in keeping us alive at any point along the way medicine is
predictably keeping us alive for potentially worse deaths. I mean, I
don't know how to get out of that. It's a terrible truth about
life, actually, that that's the case.
But that's part of — that's part of sort of
sharing the burden of human life equally, it seems to me, and I
don't — I don't think there's anything very good to be
done about that, except endure it together as best we can.
DR. KRAUTHAMMER: So you and Robby would outlaw all DNR
instructions in all hospitals.
PROF. MEILAENDER: Why no.
DR. KRAUTHAMMER: Well, I don't want to prolong this,
but I'm puzzled.
PROF. MEILAENDER: Well, in the first place, are you
talking — many people might request such for themselves, and we
haven't — I presume that you're not asking about that.
DR. KRAUTHAMMER: For all incompetent patients, you would
not allow DNR to be written on their charts?
PROF. MEILAENDER: No, not necessarily. It would depend on
CHAIRMAN KASS: We're going to wind up shortly. If
anyone wants a last comment after Mike, let me know now and —
DR. GAZZANIGA: I think I win if I don't say anything
CHAIRMAN KASS: I'm sorry?
DR. FOSTER: Let me make one last —
CHAIRMAN KASS: Dan will go after you, Mike. Dan will go
DR. GAZZANIGA: Okay. You know, if there was only one
person in the world, there wouldn't be all this talk about
morality. Morality starts when there's a group. And so if you
take this incident, this situation of withholding the drug or shooting
as being morally equivalent, you're looking at it from the
perspective of the person doing the pacemaker placement or the
If you're looking at the exact same situation from the
viewpoint of the person with the disease, it's two completely
different things going on — one, withholding of activity; two, murder,
being shot by this person.
So it seems to me that you're conferring to the — to
the person trying to help there two totally different mental states.
And so I find it very difficult to view this as a unique — I mean, as
only one way to look at the moral action going on in this particular
problem. It comes — there's two different — totally different
viewpoints that are at stake in this one act.
CHAIRMAN KASS: Dan Foster, and then we'll take a
DR. FOSTER: I only want to cite psychiatrist Prakash Desai
that I have cited I think on one other occasion here when in the
midst of theories of bioethicists I was the only — I'm
not a bioethicist, but I happen to be the trustee of the thing,
and he — we were talking about end of life decisions when
that was the big, hot subject, you know, a few years ago.
And Prakash Desai, who is of Hindu — his faith is Hindu,
said to us as a group — and I want to remind everybody here,
because I think it's a powerful lesson to remember. He said,
"You Westerners have it all wrong. Death is not the opposite
of life; it is the opposite of birth."
And this conversation has lifted up in some sense the idea
that there is some — that death is something special in life, and,
therefore, must be protected at all costs and as a consequence that to
allow — in the extreme, to allow it to occur is not an acceptable
thing for us to do.
Now I know that's an exaggeration, but what I simply want
to say is that death is not the worst enemy in life. It's not
the worst enemy in life for anybody. We hate it when it's premature.
We hate it when it's suffering. But we need to keep into context
that at the very least, in terms of the universe, we live maybe
— maybe a femtosecond — I don't know, I haven't
made that calculation — but, I mean, it is a tiny flash.
And to have — you know, not to accept that, and just to
say this is a natural thing and we ought to do the best we can to be
kind, and so forth, and not to make mistakes of killing somebody
prematurely, or something like that. I just think we need to keep this
in perspective, rather than the whole conversation as saying the end of
life, where there's not — which entropy itself is going on, you
cannot stop entropy.
We're going to all die, and all of us want to die
healthy, with an intact mind, and to die rapidly, but that doesn't
happen to all of us, or for most of us. And so I think one of the
things — I don't disagree with a lot of the arguments that are
made, but I certainly don't want to make this the key issue of what
we've been talking about, that we must keep people alive for all
time, whether there's — I hate to use the word, whether
there's any meaningful life or not.
But if you can't tell that a life is meaningless,
except in some hidden view maybe of the creator of the world, that
there is some spark there, then you don't know what it's — you
know, where they're defecating against — they can't move, they
can't do it, you're paralyzing the family, and so if you
can't tell the difference, then I wouldn't pay too much
attention to a Ph.D. degree or — a Ph.D. degree or an M.D. degree or
If you can't tell the difference between that, then
really you and I have no conversation to take place, I mean, because it
just — it just makes you park aside, it seems to me, the sensory
realities that all of us say are of necessity to make decisions.
That may have come out mean, and I didn't mean it to
come out mean at all. I just wanted to say — if you live all your
life either in fear of death or thinking that death is the most
important thing to prevent in life, then it's pretty hard to have a
happy and a mature and a normal life.
If that was too mean, strip it from the — strip it from
CHAIRMAN KASS: Well, no. Let me make — use the chair to
just make one comment. I don't — I think it's possible to
hear the arguments, say, made by Gil and Robby as sounding like a kind
of mere vitalism, in which death is the ultimate and the only enemy.
But the more I listened — and I think this is an important
point for all of us to take away — it's not so much that
death has always to be opposed. It's that one should resist
the temptation to put oneself actively against a life on the grounds
that one knows and can take the measure of its ceasing to have sufficient
worth to be here, and that it's sort of — it's not
so much the judgment that — that death is the evil, but that
there is an evil in ourselves that would come from, I think, making
ourselves the judge and executioner of a life because of our judgment
that it is somehow not worthy — fit to be amongst us.
I'm not defending their view, but I didn't think I heard —
I think you made this comment in a similar point in the last meeting,
and I think it was very well received. I don't think there's
a person in this room that would dissent from what you've said.
PROF. GEORGE: Yes, that's absolutely right, Leon. I
think either individually —
CHAIRMAN KASS: Maybe I'm wrong. If they dissent, they
PROF. GEORGE: Individually and collectively, I think Gil and
I have spoken and written against every single one of the propositions
you warned against, against the idea that death is the worst possible
thing, against the idea that you must struggle to keep alive at
all costs, against all of those things.
And I just — I'm not going to accuse you of being mean
at all, but I — I do want to put in a — register a concern that you
not hear people who think that we have very, very good, indeed
compelling reasons to stick to the traditional norm against direct
killing of innocent human beings. Don't hear that as an appeal to
vitalism or as to the idea that — that death must be opposed always
and at all costs. That's most definitely not what we're
saying. In fact, we've written against that view.
PROF. MEILAENDER: We belong to a —
DR. FOSTER: But in answer to Charles' questions, I
thought I heard yes and yes. Look, I've spent my whole life along
the — you know, I mean, I'm violently against killing people and
euthanasia, and so forth.
But I heard towards the end, when Charles pushed both of you,
that it came out that under no circumstance, except the person herself
deciding for a DNR, that the answer was yes, yes, and there were
no qualifications on it. That's what caused me to say what
I said. It was unequivocal, yes and yes.
And if that's wrong, then I need to be corrected. And
I — I'm really pleased with what you said. I obviously have not
read everything that — you know, you've written about it, and
I'm sure you have.
But that's what prompted me to say it was these two
unequivocal yes and yes, and —
PROF. MEILAENDER: Well, I didn't say that
unequivocally. I believe I specifically said in response to —
DR. FOSTER: For somebody else to — if the patient —
PROF. MEILAENDER: No, I started with that, and then I said
not necessarily always.
DR. FOSTER: Then, give me. Okay, it's —
PROF. MEILAENDER: One more —
CHAIRMAN KASS: Okay. I think —
PROF. MEILAENDER: One more sentence.
CHAIRMAN KASS: The very last sentence.
PROF. MEILAENDER: Just to add to what Robby said, we
belong to a tradition that honors its martyrs. We can't possibly
think that death is the greatest evil.
CHAIRMAN KASS: On that theological note, we will take a
15-minute break. Five minutes to 4:00 we have a presentation from
(Whereupon, the proceedings in the foregoing matter
went off the record at 3:40 p.m. and went back on the record at
SESSION 4: BIOTECHNOLOGY AND PUBLIC
PROF. MEILAENDER: Well, why don't we get started.
This is a session on biotechnology and public policy, the first of two
sessions devoted to questions of regulation. The Council has, since
its very first meeting, had an interest in this topic. It's, in
fact, an interest that we have followed almost throughout our entire
And the question — the large question that underlies that
— those discussions and inquiry is: can we find ways to govern for
the good the uses of these novel and challenging biotechnologies,
repeating their benefits while at the same time upholding human freedom
We've issued a report on this subject, Reproduction and Responsibility.
It is, in important respects, an interim report. It was primarily
a diagnostic document, though we did make recommendations in the
interim, while suggesting that the conversation had to continue,
about which of the various possible regulatory models might be most
And we have today and tomorrow morning two sessions that
constitute part of this Council's continuing inquiry into that
topic. Tomorrow morning we are very fortunate to have two members of
the Canadian government — Health Canada, Ian Shugart and Glen Rivard,
who are here today — welcome to you — and they will tell us tomorrow
about the very interesting new system that Canada is instituting
following legislation passed earlier this year.
We heard something about this way back from Patricia Baird,
who was part of the original commission that was looking into this.
But these gentlemen have had a hand in actually getting the legislation
through and implementing it.
Today we are privileged to have a presentation from Frank
Fukuyama and his colleague, Franco Furger. Welcome, Franco.
Frank, more than any other member of this Council, has been devoted
to this subject. He is in a way the spark and the father of our
inquiry. I think everybody knows that he has also, with support
from foundations, been conducting his own seminar over at Johns
Hopkins. I and several members of the staff have been privileged
to sit in on these meetings. As Frank will tell you himself, this
work is the work of the two of these gentlemen. We present it here
not because it represents the thinking of this Council but because
it represents important thought that should be brought to this Council.
And we hope that the conversation will help your project and that
this presentation will help us in continuing to think about this.
So the floor is yours, and thank you very much.
DR. FUKUYAMA: Well, thank you very much, Leon, for giving
us this opportunity to talk about our project on biotechnology
regulation, and we appreciate you and the staff attending our meetings
over the past 18 months.
The presentation we're going to give you today is going
to be a little bit different than the slides that are in your briefing
book. We are going to skip over the description of the existing
regulatory framework, because that was actually quite adequately
covered, excellently covered in the Reproduction and Responsibility
Report that the Council issued. So I think you are quite familiar with
a lot of that.
We do have an Executive Summary of about 25 pages. If
Council members would like to see a copy of that, we will be happy to
give it to them. We're not releasing it publicly at this point,
because we wanted to get comments from our study group first and
I hope within the next month we'll actually have something ready
for public release, and the full body of the study is really a massive
— it's really more of a book than a report, several hundred
pages, that covers the regulatory waterfront quite exhaustively.
I would like to pay special thanks to Franco Furger, who is
seated to my left. He has really been the driving force behind this
project. He has drafted most of the report, and the real research and
work of putting together both the study group and the report itself are
really — are really due to him.
It's entitled "Beyond Bioethics," because it
was our feeling for some time that the model that was settled on in the
1970s where the scientific research community and certain areas of
biomedicine were left largely self-regulating, with advice from
bioethicists on the ethical dimension was no longer adequate to meet
the demands of the technologies, the ethical challenges that the
technologies would put forward, and that we needed to talk about the R
word, the regulation word, much more explicitly. And that is really
the subject of the talk today.
Go ahead, Frank.
Now, the project has been running for the past 18 months.
We've had a series of about 11 study group meetings involving —
not all of these 39 members came to every meeting, but we tried to get
all of the major stakeholders that had an interest in the broad area of
biotechnology, reproductive medicine, from, you know, the biotechnology
industry organization to members of the President's Council, and a
lot of scientific groups representing scientific research communities
of various sorts, and the like.
If you are interested, we also have a website and a regular
newsletter that reports basically on regulatory and legal issues
related to human biotechnology. And you can sign up for the
newsletter. You'll get it automatically, or you can go to our
The study group members are being asked to comment on the
report, but the — when I say "we" in the subsequent
presentation, the "we" just refers to myself and Dr. Furger.
The members of the study group were not asked to actually endorse the
contents of the report.
This is just a screen shot of our website. It's quite
involved. It really has quite a lot of sections, so I really do invite
you to — to take a look at it.
Okay. Go ahead.
This is an overview of what we're going to be talking
about this afternoon. We're going to define the domain of inquiry,
say a few preliminary things about regulation. We are going to talk
about the ethical principles that motivate the desire to regulate, and
then we're going to — actually, we're going to drop out most
of that last point, regulation in other developed countries, except to
talk very briefly about Britain and Canada. We'll obviously hear
much more about Canada tomorrow morning.
And then, finally, pros and cons of alternative approaches,
which range from basically the status quo to creating a new regulatory
institution. We opted for the option of a new institution, but we
really did want to try to be judicious in our consideration of
different kinds of approaches, and then to define what a new
institution might look like.
It is basically an independent agency, of which there are
many scattered around Washington, but we believe that we need some
innovation in incorporating new mechanisms for public participation.
So we will describe this in much greater detail.
Incidentally, this is, you know, in a way an issue that all
regulatory bodies, both national and international, have been
struggling with, because there's a feeling that the old mode of
top-down formal regulation is not adequate to meeting the — you know,
the demands of kind of popular participation and the solicitation of
kind of ownership by the people in the society, the broader society
that the regulators effect, and so it comes up in a lot of different
contexts, not just in this biotechnology one.
And, finally, we're going to say very briefly something
about constitutional constraints and some international considerations.
Now, the domain of inquiry is very similar to the one that
was defined in the Reproduction and Responsibility Report. It's
technologies and medical practices related to human reproduction, not
necessarily those that had the intention of producing a child, but ones
that were related to it, and that includes several areas — the
practice of medicine involving artificial reproductive technologies,
But it also includes scientific research in the area of
stem cells and research cloning. Obviously, stem cell research does
not aim at reproduction. But since the embryonic stem cells come from
embryos, it obviously is related to the whole area of reproduction. So
our interest is in covering that. I don't think you can really
separate the two of them out.
And just to indicate the kinds of technologies we are
talking about, it's things like prenatal genetic diagnosis and
screening, reproductive and research cloning, if germ-line modification
becomes possible in the future this would fall under this category,
novel forms of reproduction of the sort that were mentioned in the
Reproduction and Responsibility Report, you know, the fusing of
embryos, the walking back of, you know, adult stem cells to oocytes, a
lot of the things that seem to be in the pipeline right now.
Now, we thought that we ought to lead with this, just to
clarify where we're coming from on this topic that we and this
Council have discussed at great length in earlier years. Obviously, it
is very difficult to talk about regulation without getting past the
issue of the status of the embryo.
I think that the — the controversy over this may well make
our effort difficult, if not impossible, to actually accomplish in this
society. And as you'll see, I think it will require a prior
consensus on resolving this issue. But just to put our cards on the
table, we start from the position that's been defined in this
Council as one of, you know, believing that embryos have an
intermediate moral status, which means that we believe that both embryo
and stem cell research are legitimate activities and can be done.
What to me "intermediate moral status" means is that
embryos do not have the moral status of infants, but they are also
not simply clumps of cells, and need to be treated with a certain
degree of respect. And in our view, what that means, among other
things, is that they cannot be disposed of or used, except for the
most important and serious ends. We do believe that stem cell research
is one of those ends that is legitimate.
I would just make a — you know, an analogy. I think
there's another category of objects that have this similar
intermediate status, which would be dead human bodies, cadavers, which
are, in fact, instrumentally used in medical training and other things,
but you cannot casually dispose of them. We pay a certain degree of
Now, I don't want to — I certainly do not want to
provoke an argument over this. I'm just — this is in the interest
of full disclosure. This is really our starting point and the premise
with which we begin this regulatory project.
Now, some general considerations about regulation. I think
it's quite appropriate to be very cautious about calling for
excessive regulation, because whatever you regulate you obviously get
less of. And we, above all, do not want to stifle innovation and
growth, and, therefore, we think that those that want more regulation
ought to really demonstrate quite effectively why that is necessary.
On the other hand, I believe that in the current climate in
the United States right now, if you actually want to make progress in
something like stem cell research, it is extremely important to think
seriously about the appropriate institutional regulatory framework
under which it can be done successfully.
There's a clear example of this. The British Human
Fertilisation and Embryology Authority is an extremely strict regulator
of embryo research in the United Kingdom. Every embryo that is
produced in any fertility clinic in Britain is tracked and registered
by the HFEA. So it's a much stricter regulatory regime that exists
— than certainly the one that exists here in the United States.
On the other hand, it is perfectly compatible with a
vigorous stem cell research effort in Britain. Britain is one of the
leaders in this area, and I would argue that if the United States wants
to be a leader it — it needs to do that also.
I mean, it needs to give serious thought to the regulation,
because the regulation will present abuses happening that are
consequentialist abuses of the — I mean, if you think that stem cell
research is legitimate, but you are worried about the further, you
know, moral slippery slopes that come from it, I think that you
absolutely need a regulatory framework to put some firewalls against
those kinds of possibilities.
I'll just give you this brief analogy to what we think
we're doing, or the kind of juncture we think we are at
historically. In 1887, the Interstate Commerce Act produced the
Interstate Commerce Commission that existed up until I think 1995 or
so, which was to regulate railroads in the United States.
The Hepburn Act, in 1906, gave trucking regulation to the
ICC on the grounds that trucks simply moved goods over state boundaries
just the way railroads did. And I think most experts in administrative
law felt — have felt in retrospect that that was a really big mistake,
because the economics and the politics of trucking and railroads were
sufficiently different that the expertise did not transfer over.
And, therefore, when civil aviation came into being in the
1920s, the United States did not give civil aviation regulation to the
ICC, which conceptually it could easily have done. It created agencies
that eventually became the Civil Aeronautics Board, and the Federal
Aviation Authority, too, as new, independent regulators.
And that's really our argument. I mean, you could use
the existing regulatory system in the United States to carry out some
of these tasks. But it is our view that given the narrow mandate of
the Food and Drug Administration and the National Institutes of Health,
we do not think that that is an adequate basis of doing this.
Now, in your briefing books, you — oh, I'm sorry,
we're not quite at that point yet. All right. Let's go ahead.
All right. Now, this is — this next section is going to
talk about the ethical principles that we believe motivate our desire
to create a new regulatory institution. Obviously, you can't say
that you want to regulate something unless you have some idea of the
goals or the goods that you are going to try to achieve.
And so we're actually going to steal a page from the —
you know, the Canadian approach to this that you'll see tomorrow
morning and begin with, as they do, a statement of principles, although
our principles are a little bit different. And then, the principles
generate a list of activities that we believe ought to be prohibited
outright, as in the case of the list that was in the Reproduction and
Responsibility Report, and then a series of activities that we believe
are legitimate but need to be regulated.
General ethical principles — again, this will seem very
familiar to members of this Council. We put well-being and the health
of children at the top of the list, above the right — we think that
access to ART on the part of infertile couples is an extremely
important social good.
The million children produced by IVF have been, you know, a great
blessing to those people, but we believe that the well-being of
the children that are produced by this technology has a higher,
you know, ethical status than the desires of the couples involved.
You know, many people would say that those are indistinguishable,
because parents want healthy children.
They want the best for their children. And, therefore,
what they want, you know, is a good proxy for the well-being of the
children, but in our view that's not always the case. It is
largely the case, but there are many instances you can imagine in which
the interest of the parents in having an offspring may outweigh the
well-being of the child produced. And by "well-being" we do
not simply mean health in a kind of narrow physical sense. We mean
psychological and social well-being as well.
As you'll see in the statement of prohibited
activities, you know, our interpretation, like that of the Council, of
what "well-being" means, it means among other things being
related to a — biologically related to a mother and a father. And we
believe that technologies that, you know, create children that do not
have that relationship do not adequately take into account the — you
know, the ultimate psychological and social well-being of the child.
The third principle, the well-being and health of women, is
obviously important because there are certain risks that women take in
artificial reproduction. They are not borne by men in terms of need to
— you know, for hyperovulation, and so forth. But we put it below the
first two principles simply because it's done voluntarily on the
part of the women that undergo the treatment.
And then, the next two are fairly self-explanatory — free
and informed consent. Again, as the Council pointed out in the R&R
Report, you cannot have free and informed — I mean, you know, a lot of
IVF, as it moves from the laboratory into clinical practice, really
does amount to a form of human experimentation in which you can't
really get the consent of the ultimate subject of that experimentation,
which is the child.
And it puts a special burden I think on
information-gathering, and so, of course, the — you know, the R&R
Report's recommendation for funding of better longitudinal studies
of the health of ART children I think is really critical here and
implied by that principle.
Finally, a principle that we would add is that we believe
therapeutic overenhancement uses of biomedicine ought to be emphasized
in any regulatory scheme. Of course, you know, we've been through
— since the Council wrote an entire study on this subject, we
don't have to rehearse this. But despite the fuzziness of the
distinction in many cases, we think that it's still one that is
extremely important to hold on to.
We don't believe that we need to ban or prohibit
enhancement uses of biomedicine. I don't think we would want to.
But certainly a regulatory system can bias things heavily in favor of
therapy overenhancement in terms of the relative costs and the barriers
over which you — that you have to overcome in proving the — you know,
the safety of procedures, and the like.
Now, this statement of principles translates into several
targets of prohibition — again, very familiar territory. Reproductive
cloning, creation of chimeras and hybrids, we — you know, again, as
the Council did — make exceptions for certain, you know, research
chimerism. But we think that, you know, creating a chimera with an
object of reproduction is something that simply should be banned
Germ line, because we don't see any way that this can
be done safely now or in the foreseeable future, again, the new
reproductive possibilities that alter the biological relations of
parents and children have to do with, you know, things like fused
embryos or these new technologies coming out of stem cell research that
would produce children that — you know, that did not have this
relationship to a mother and a father, and then limits or a prohibition
on the patenting of human embryos.
Now, the issue that would be regulated: we believe that we should
permit research cloning, but that it should be carefully regulated.
Now, this is obviously a choice that many people would not make.
I would point out that, as you'll see shortly, the
difference between the British Regulatory Agency and the Canadian
Regulatory Agency — in most respects they are identical institutions
with very similar kinds of goals, but they differ in this one — on
this one issue.
And you could create a structure of the sort that we are
proposing that would actually prohibit research cloning, and would
still do all of the other things. So, in a sense, I don't want
people to get too hung up on the fact that we believe that this is
legitimate and simply subject to regulation.
But we also clearly believe that PGD ought to be regulated, biomedical
research involving early stage embryos, blastocysts, the kinds of
things like limits on, you know, the stage of development beyond
which research is legitimate — these kinds of issues —
sex selection and commercialization of other elements of human reproduction.
We don't think that there should be a completely free market
in the, for example, in the sale of gametes.
Now, we've skipped over — you'll see the slides in
your briefing book. We had some focus on the British and Canadian
systems, but this Council has been over this. This chart — in the
full study, we have a comprehensive listing of every international
piece of legislation in this area over the past decade or so. It's
an extremely long list. This is just illustrative of some of the
legislative initiatives that have been undertaken.
Four countries — Canada, Australia, the UK, and France —
have actually set up new regulator — regulatory institutions in the
last decade of the sort that we are proposing to do. And virtually
every other country, developed country, has passed legislation in this
area. And in this respect, the United States is a big outlier.
We are really the only developed country that does not have
legislation, for example, even on the narrow subject of cloning in
place. And many other countries have been considering this, so this is
not an outlandish proposal. It may be outlandish in the context of
American politics, but certainly, you know, when we compare ourselves
to even our Anglophone peers, we are very slow at working to this
Just very briefly, to give you a preview of what you're
going to hear tomorrow about the Canadian system — again, this just
emphasizes that the Canadian Assisted Human Reproduction Agency, this
new agency that was just created by the Assisted Human Reproduction Act
this year, sets up a new agency very much modeled on the British HFEA.
And they do very similar sorts of things, or at least they intend to
do very similar sorts of things. And, again, they differ in this
one area: that the HFEA permits reproductive cloning — I'm
sorry, there's a mistake there. I'm sorry, under Britain,
it's reproductive cloning permitted, not prohibited. And Canada,
reproductive cloning prohibited. Yes.
No, I'm sorry. No, that's right. No, that's
right. They're both — I'm sorry, I was getting the wrong —
yes, right. The research cloning is regulated. Sorry, okay.
All right. Now, we're going to run briefly over — I
think we've got four major baskets of alternatives of how to
proceed with regulation. One is simply to use the existing statutory
powers that exist in the FDA and NIH and the various state agencies.
You'll see in the slides in your briefing book we go over
all of the existing powers — I mean, you know, just very brief.
Well, so that's one alternative — to take those existing
statutes and reinterpret them creatively to give the existing agencies
powers to do some of the things that we want to do. That's
The other is direct legislative intervention. There are a
number of cloning bills in — you know, that have been introduced into
Congress. There's a lot of state legislation in this area,
including, you know, most recently Proposition 71 in California.
Self-regulation is an existing practice, but it is something that could
be beefed up in many respects. And then, finally, our preferred
option, which is to create an entirely new regulatory authority.
Now, in terms of using existing powers, obviously it's
hard to measure the cost of new regulation. But if you go with the
current system, you're clearly going to avoid a lot of direct costs
of creating the new authority, and then the more important indirect
costs of the opportunities forgone by the fact that you're limiting
both scientific research and medical practice.
And the FDA has, for example, sought to regulate
reproductive cloning by arguing that basically human embryo is a
biologic that falls under their statute as something that they can
regulate. We think that there are a lot of problems with this
approach, major gaps. Again, people should be quite familiar with
The FDA, you know, only regulates drugs, medical instruments,
and biologics. And it's a lot of creative, I think, legal argument
that says that an embryo is actually a biologic. We have heard
from quite a few lawyers that think that this would not really stand
up to a court challenge.
And in that respect, you know, the NIH can — you know, in
a sense has broader powers to regulate — on the basis not
simply of safety and efficacy, and not simply those three categories
of products. But also, you know, can make decisions on funding,
you know, embryo research and the like, which it has done. But
it only covers federally-funded research, and really does not cover
the private sector at all.
And, finally, there's an issue that Jim Wilson, among
others has written, you know, very perceptively about in the past,
which is that regulatory agencies that are created for one purpose not
only have formal statutory powers, but they also develop a kind of
bureaucratic culture that is oftentimes very difficult to change.
And so if you give it a substantially different mandate, in
this case the mandate to consider certain kinds of ethical issues in
addition to safety and efficacy, a lot of times it's just very
difficult for the — you know, the old institution to adapt to these
Now, direct legislative intervention. Obviously, Congress, if
it passes a law prohibiting something like reproductive cloning,
can speak much more authoritatively. And I think it's important
to point out that we would not — we do not believe that something
like the status of the embryo, the moral status of the embryo, is
an issue that can be delegated to any regulator. That's obviously
a very controversial and important ethical issue. It needs to be
decided by the society and not — not delegated. And when
Congress does speak, you know, we know, really, where the American
On the other hand, we believe that in the future there are
going to be lots of very tricky decisions that will be put forward by
new developments in technology that Congress simply does not have the
expertise or the time to legislate specifically on.
And even if they were to legislate, we don't believe
that this is a good idea, because, you know, this kind of direct
legislation is too — you know, it's a big hammer, and you need, I
think, a more delicate instrument to make some of these kinds of
For example, the current cloning bill, just as an example of the inadequacy
of the current direct legislative proposals, the S. 303 is a bill
that was put before the Senate that would ban reproductive cloning
and permit research cloning, human embryonic stem cell research
But we believe that if you read the bill carefully, it is completely
inadequate in terms of the regulatory oversight that it —
it provides. It basically says that any new protocols have to be
given to an IRB. And for reasons that we detail in our longer report,
IRBs currently, as set up, are simply not capable of making decisions
Proposition 71 is even worse. I mean, this was a
proposition that was deliberately designed to strip out as many
institutional constraints on scientific research as possible. I think
it's safe to say it's kind of like turning over the henhouse to
the foxes in a certain sense in terms of the governance structure.
And so what we're trying to do is — is think through
seriously, if you didn't want to do that, what would a regulator
Self-regulation — this exists right now. ART is
self-regulated by ASRM and SART, the two major associations that
represent the ART practice of medicine. And, again, this is repeating
stuff that was in the R&R Report.
We really don't have enough information in a certain
sense to know fully how effective it is. Certainly, there are limits
to what self-regulation can do. The other thing that's important
to note is that there is no clear dividing line between regulation,
formal regulation, and self-regulation. All formal regulation
ultimately requires cooperation, substantial cooperation, on the part
of the regulated industry. That's where all the knowledge of
what's going on comes from.
And in many ways, the most effective forms of
self-regulation operate in the shadow of the possibility of formal
regulation. And so I don't think that it's sufficient to, you
know, simply throw up self-regulation as a clear alternative to a more
And, finally, our choice for the reasons stated: in order to incorporate
ethical decisionmaking or ethical considerations into the regulatory
decisionmaking, we believe that you really need a new institution.
And also one that will deal explicitly with the question of interest
group capture and deadlock.
And, again, you know, the flip side of this is the pros of
sticking with the current system, the opportunity cost of creating this
new institution. Now, we're going to go on to talk about what that
might look like, if we did number 4, alternative number 4.
Our proposal is modeled on both the British and Canadian
authorities. The central design criteria is the need to avoid capture
of the agency or of the polarization within the agency between various
single-issue interest groups, so that it will simply not, you know,
serve the interests of, let's say, the biotech industry or the —
you know, the ART practice of medicine. It cannot also be held up, you
know, simply by — by pro-life groups.
Now, the rationale for doing this is really based on our
understanding of where the American public is as opposed to the
interest groups. You know, there is a — in the discussion of public
choice, there's this kind of debate over what constitutes the
public interest. And for many people, public interest is simply, you
know, all of the existing well-organized interest groups that show up
at a public hearing.
And for reasons that we will detail in the next few slides,
we do not believe that this is an adequate approach, because we think
that the existing interest groups, particularly in this area, actually
are not representative of the American people at all. They are much
more polarized and represent a much narrower set of views than the
American public generally.
And, therefore, we take a new approach in which we give
statutory power to a new independent agency that will be constituted to
be able to incorporate this kind of ethical decisionmaking.
Obviously, it will be based on the expertise and with
respect to the scientific researchers and the — the — you know, the
biomedical practice in reproductive medicine, but will also reflect
broader societal concerns. And, therefore, it is very important in the
design of this agency to have new mechanisms to encourage public
We think that the current deadlock over cloning, in which there is,
you know, general agreement that we want a ban on reproductive cloning,
but are very divided on research cloning, which has then prevented
the emergence of any legislation whatsoever, represents a kind of
political failure in this country that other countries have not
been subject to.
And we think that this actually does not reflect the interests
of the American people, as far as we can tell, through empirical
evidence. And to demonstrate this, if you look at — and we
cover a great deal of polling data in our study — if you look
at what the American public thinks about research cloning, they
are not terribly sympathetic to it in the way that the scientific
research community is.
For example, if you poll Americans with a kind of neutral formulation,
in which you balance the rewards from research cloning against the
fact that you are destroying embryos, basically you get a two-to-one
And, obviously, you can stack the results of these polls
depending on the way you ask the question. So if you talk about the
benefits, you get to a 50/50 split in the American public. And if you
mention only the destruction of embryos, you get much higher
But the balance formulations really lead to general
opposition, which means that the American public is really not at all
where the scientific research community is on this issue.
On the other hand, if you look at something like stem cell
— embryonic stem cell research, using excess embryos, I think it is
very clear that there's a very large majority of the country that
is in favor of doing this. You look at the Harris — the first Harris
poll for 2004, 72 percent of Americans support this kind of research,
and only 13 percent are opposed to it. And that — you know, and
public opinion has been moving in that direction as we have debated
And, therefore, the current policy is not one, you know, at least
according to this poll data, that is generally supported by the
public. And what this I think is meant to illustrate is that, in
fact, the current polarization that exists in Congress and in the
debate on the part of the interested, organized groups, is actually
much more polarized. You know, the American public occupies a much
more centrist position, and I think one that would actually support
our proposal to permit, for example, stem cell research, but under
strict regulation. Much more than actually any of the existing positions.
All right. So the problem of institutional design is to make the institution
both independent and representative, and I suppose you should add
effective, and capable of making actual decisions.
So we have a kind of two-tier approach to doing this. The
actual power to make decisions will be vested in an independent
agency. The way that these are designed, you know, comes down to
things like appointment terms and voting rules. In many independent
agencies, the President appoints members of, you know, the agency or
commission. They serve for fixed terms. They have to be approved by
— you know, by the Senate.
We have a detailed discussion, which, you know, we can
discuss at greater length if you want in the question and answer
session about how we think we ought to approach the creation of the
board of this agency. But our view is that it should not simply
represent the existing groups, that we should — you know, that the
President ought to use his discretion in this to seek as many
independent commissioners that are not clearly associated with — you
know, with that approach.
The second tier of this is an advisory function that has to
do with mechanisms for public consultation. Now, existing
administrative law provides for this already, and it's built into a
log of regulatory agencies. The Administrative Practices Act from the
1940s provides for notice and comment, which is, you know, routinely
done on — when an agency wants to promulgate a new regulation.
We think that this is not really an adequate, you know,
approach. Generally speaking, agencies, by the time they post a rule
for notice and comment, have already actually gone through a
consultation process with a lot of the stakeholders, and very little
tends to happen as a result of the — the public input at this point.
Again, public hearings are built into a lot of decisions
on, you know, things like toxic waste management, you know, nuclear —
sighting of nuclear sites and the like. And, again, the actual
empirical record of public hearings having, you know, major impacts on
— on decisions is — tends to be limited.
There are some newer mechanisms like consensus conferences and
citizens' panels. A consensus conference is a relatively small
group of citizens that are chosen to be somehow, you know, broadly
representative of the public, who actually sit — they are
given information, they are brought up to speed on the nature of
the technology — and then they sit down in a small group and
discuss that, and try to come to a — you know, a decision
on, you know, what the appropriate regulatory response ought to
It's an interesting procedure. It's used in — you
know, in the United States. I guess the NIH has used it in
environmental law, and other places. It's used very extensively
outside the United States, in Denmark particularly, in Japan, in
Switzerland, in other countries.
The big problem with this is that if you empanel, you know,
one — one consensus conference of 20 citizens, you have to wonder,
even if they come to a consensus decision, you know, what that
represents, because, you know, it's just 20 citizens. And so, but
it is something that has been used in rulemaking in — you know, in
And there are lots of precedents, you know, for — for all
of these measures — public participation measures. At a federal
level, most of these are in the area of environmental law.
We believe that we really need public participation as a
buffer against interest group polarization, but that then represents —
you know, raises a question of who should you consult, or who are the
real stakeholders? And as I said, many people — the answer to that
would be, "Well, whatever interest group simply shows up."
But, you know, there's been a lot of writing on the
participation of NGOS and interest groups in this kind of regulatory
decisionmaking. I mean, it exists both at a national level and at an
international level where there are all sorts of proposals. You know,
the UN already incorporates a lot of this sort of thing, of consulting
NGOs and their various proposals to have this incorporated into WTO
It is very problematic in a lot of respects, because NGOs, you
know, claim to represent the public good. But they — you know,
they may or they may not, and they're not accountable. They
do not, you know, have clear rules. There is no way of knowing
whether the interest groups that actually show up are, in fact,
broadly representative. There are plenty of cases where you get
very good decisions, regulatory decisions, that are nixed by a very
unrepresentative NGO that just happens to be very well organized
And so we — you know, we think that this is not an
adequate approach. And so, therefore, in a sense we need public
consultation, but one that has to be much more, you know, guided in a
sense, you know, to avoid — to avoid that kind of problem.
There's a further problem in this particular area of
scientific literacy, because, of course, there are big problems with
simply how much the public knows about, you know, particular issues.
You know, it turns out that people don't understand the difference
between reproductive and research cloning, and the like, and then they
change their attitudes once they discover what — you know, what the
And so, obviously, you know, to say that you're going
to consult the public means that they have to have a certain basic, you
know, degree of information about the technology. And then, finally,
you would like the consultation to be deliberative, so that it's
not simply polling existing, you know, strongly-held preferences, but
in a way the shaping of preferences through a kind of discussion.
Again, there are problems with this, because sometimes
deliberation doesn't lead to consensus. It actually leads to
greater polarization. I don't know that there's a clear
institutional solution to this, but it is a danger of this approach.
So this is our proposal, I guess in a nutshell. The
independent agency structure to require — I guess there are
constitutional constraints on whether the statute can actually require
this kind of balance, but certainly it would be a recommendation to the
President in terms of the appointment of, you know, the Commissioners
to achieve a kind of balance and independence on the part of the
And then, public participation mechanisms — and this is
the part that I think really is new and does not exist in any existing
regulator in the United States right now — deliberative panels.
For example — essentially, what it does is take a —
a consensus conference, and simply multiply it. So that instead
of having one consensus conference, you may have, you know, a couple
dozen or even larger.
I mean, there have been cases that have been sponsored, you
know, not — not in terms of government rulemaking, but in other areas,
where you empanel a lot of panels that are designed to be, you know,
much more broadly representative by the usual criteria of geographic
representation, age, gender, occupation, socioeconomic status, and the
like. These can be supplemented by various forms of targeted surveys.
We think that, you know, the internet and new forms of
technology — communications technology, give you also certain other
opportunities for public consultation. That's what the
consultative college refers to, which is instead of bringing people
together and empaneling them for, you know, in effect a town hall
meeting, you can have kind of ongoing discussions that, again, will
have to be carefully managed by the agency, but with the purpose of
eliciting both deliberation and, you know, solicitation of public
Constitutional constraints. I mean, I think the issue has been
brought up by a number of people that if we actually wanted to create
this kind of agency, it may fall afoul of some constitutional issues
having to do with procreative rights.
We don't believe that this is the case, because we think that
the courts are likely to recognize a much more traditional understanding
of any right to any procreative rights. We certainly would endorse
a fairly modest interpretation of that. And I think that, you know,
the more — I mean, there are law professors that have argued
that, you know, there's a constitutionally protected right to
use ART for reproduction. But we think ultimately that this will
not be a barrier.
The final — go ahead. The final slide simply has to do
with international considerations. These are issues that have been
already debated in the United States at an international level. There
are various, you know, approaches to that, but we basically think that
this is not the time for any consideration of international
regulation. Until you have national rules being created, it is very,
very premature to talk about any type of international agreement. And
in any case, I doubt very much that you are going to — you are going
to get it.
So that is our proposal, and we welcome — we are in the
process of working it. We solicit, you know, reactions, and we hope to
be able to actually publish the document, both the Executive Summary
and the longer version of this, sometime in the spring.
Thank you very much.
CHAIRMAN KASS: The floor is open for discussion. Jim
PROF. WILSON: Frank, you and your colleagues have done, as
I would expect, an admirable job of summarizing what needs to be done.
And as you know, I agree with you that a federal regulatory agency is
necessary, and I agree with you that research under carefully regulated
conditions on embryonic stem cells should not be barred.
My concern is with the structure of what you have
suggested. If you look at the history of federal regulation across a
variety of areas, we've had essentially two strategies. One is
summarized by the ICC, the Federal Communications Commission, the Civil
Aeronautics Board, the National Labor Relations Board, the Securities
and Exchange Commission, all created to represent interests.
And then, we have a different strategy of single-headed agencies
— the Occupational Safety and Health Administration, the Environmental
Protection Agency, the National Highway Traffic Safety Administration,
and others. And as a generalization, admitting of some exceptions
— I'll put the Food and Drug Administration aside, because
it doesn't fit any of these generalizations — the commissions
have failed, and the single-headed agencies have succeeded.
And I think the reason for that is that you can hold somebody accountable
in a single-headed agency. And if you don't like what the EPA
is doing, or OSHA is doing, you know who to investigate, and you
know who to publicize.
Secondly, we have learned from experience that when the
President makes appointments to commissions, he will appoint the
obvious stakeholders. And in the case of the ICC, he appoints railroad
operators, and occasionally truckers. In the case of the CAB, people
close to the airline industry. In the case of the FCC, people close to
The National Labor Relations Board is a bit different,
because Democratic Presidents appoint union members, and Republican
administrations appoint conservative members. So the NLRB is the most
frequently sued regulatory body in the United States, because it has a
built-in degree of conflict.
So that though I am in favor of some degree of
consultation, I might not go far as the deliberative panels, because
they might exhaust this country's limited capacity for
consultation. I wonder if you have good reasons for having rejected a
single agency head in favor of a commission?
DR. FUKUYAMA: No, I'm glad you brought that up. No,
we are really not — that's not fixed in stone. And, in
fact, when we presented it to our study group, Ernie Gellhorn, who
is a fairly prominent expert, legal expert, in public administration
regulation, actually made exactly that point: that the single-headed
agencies are usually much more — I mean, apart from the —
you know, apart from the politics of the appointments of independent
commissions. He also pointed out that they are much more effective,
because you don't have to get a board of regulators to all agree
on something, and get deadlocks, and so forth.
We had started out with this idea of a — you know, of an
independent commission, you know, simply because that was the British
model. They've got 17 commissioners. But I think that that's
a kind of — you know, that's the sort of useful comment that I
think in the specifics of the design we are looking for, because there
does seem to be a, you know, strong opinion that a single-headed agency
is a — you know, is a better way to go.
CHAIRMAN KASS: Before I simply let people get in the queue
to make comment, let me make an observation that might guide the
discussion. This group — it is well-known to everybody —
is divided on the question which Frank, for his own proposal, stipulated.
Namely, judgment on the moral status of the embryos, such that certain
kinds of research would be licit, if regulated — a principle
which is not universally shared here.
And when we discussed the question amongst ourselves, it
was perfectly clear that — at least as I remember Gil putting it, he
would be delighted to support a regulatory agency, provided he could
choose the principals and name the members.
And there will be people for whom this proposal is noxious because
of that particular fundamental question. And Frank has as much acknowledged
the difficulty of trying to get this proposal a public hearing in
this country by virtue of the national division on this. It may
be more polarized than the Congress as a nation, as a whole, but
who knows until one tries.
I don't want to silence anybody who wants to raise principled
objections to the entire enterprise on those grounds, and I would
cede the floor to you. But it would be, I think, useful to Frank,
and also useful to us, for the sake of reflection to — because
it seems to me it's possible to design such a thing in which
embryo research was not the central piece of this.
So it seems to me we have an opportunity to hear — here to
think about the question of how, if one wanted to try to practice
regulatory activity in this area, knowing the problems of polarization,
and knowing the problems of capture by the regulated, what are the ways
to think strategically about how to do this — I mean, how to do this
Jim Wilson's first comment starts along those lines. And
I would at least like to make sure we reserve a significant portion
of this time treating — sort of stipulating with Frank his
assumptions — and then trying to think through the mechanism,
including questions of the degree of public participation, where
this should be located, and things of that sort, knowing that there
are at least a significant number of you who were lost in this proposal
by the second or third slide, whenever it was, and this proposal
may be lost to America for similar reasons.
But it seems to me that if we're really thinking about this,
that we should try to enter into the discussion in the spirit of
a proposal as offered. People are obviously free to dissent even
from that chairman's suggestion, and anybody can say what they
wish. But that, I think, might be the most — it is a new
thing for us to try this out.
DR. GÓMEZ-LOBO: Of course, I am a voice dissenting here,
but I won't repeat the arguments. What I really need is something
like education in American constitutional law, or something like that.
And the reason is this — Frank, you extol the HFEA, and, to be very
frank, I'm rather appalled by the HFEA.
I remember when we had representatives here one person was
heading the — the Authority, and I was appalled at the lack of
reflection on the moral issues. And you mentioned several times that
there were going to be ethical issues decided by this Authority.
So the first thing I would like to know is: what's the point
of giving this huge responsibility to a body that's going to
be appointed on — I'm not sure on what grounds. I mean, representative
— you know, you gave us some leads. But if I were appointing this
Authority, I wouldn't know how to appoint it. Probably it would
end up being appointed according to political variables.
But let me go to the — perhaps the deeper issue. I'm
sure there are sensible analogies with the ICC, the FAA, etc. But
unless I'm totally wrong, none of those regulatory institutions
deals with something as basic as this. I mean, we're really
dealing with human life, with the decisions, you know, life and
death decisions pertaining to early stages of life.
Now, even if we grant this, what I'll call "intermediate
status," which I've never understood, and you're going
to have a give me a very, very detailed explanation and argument
for the status and when it ends, etc. But are we talking here about
something that traditionally has been directly in the hands of the
state, of legislation, of the courts?
I mean, traditionally, the state is the warrantor of human life,
is the institution that we, as human beings, have to protect such
basic things. And then, of course, we go to court or there's
also penal law for breaking — you know, for having these basic
goods. So I'm just not sure — why delegate such important
decisions that should be in the hands of the community as a whole
through the Congress, through the courts? Why delegate that to,
you know, 17 members?
DR. FUKUYAMA: Well, Alfonso, we'll have to have the
discussion about "intermediate moral status" offline I
think rather than in the — in this session. I would simply
say that right now, given the nature of American law in this area,
you have delegated decisionmaking in this area to the market. I
mean, that's the only constraint that exists now.
If an IVF clinic, you know, wants to fuse two embryos and
produce a child, bring it to term, that has four biological parents,
there's no legal restraint on that. There's no legal restraint
on reproductive cloning. There is no legal restraint on, let's
say, taking a man's adult stem cell, walking it back to an oocyte,
you know, having that oocyte, you know — I mean, having the man then
be the mother of a child.
There's no legal restraint on harvesting a fetal egg,
producing a child that, you know, basically has an unborn mother. I
mean, all of these things — you know, nobody is doing that right now,
but when you say, well, you know, the state ought to take a position on
this, the fact is we don't.
And so this is, you know, our attempt to say that these are
extremely important issues, and we should not leave it up to the market
simply to decide on whether this is legitimate or not. And we, in
fact, ought to create, you know, a mechanism by which the American
public, through a kind of structured, you know, set of procedures and
institutions, ought to decide whether we actually want this thing to
happen. And I guess that's the simplest answer.
CHAIRMAN KASS: Also, by the way, just — there was
a slide of some importance on part of this that I think I'm
— if I'm not remembering, Frank did say that some of the
very large issues were not to be delegated, but had to be decided
through national deliberation, such as the question of, well, what
gets called the moral status of the embryo. And that some of the
larger issues in value terms would be set nationally by legislation,
leaving the more specific narrow questions to the Commission or
to the panel, if I'm not misremembering.
DR. GÓMEZ-LOBO: A very brief followup. What you say is
very persuasive, but it seems to me that that's precisely an
argument for legislation in the area, not for the creation of an
DR. FUKUYAMA: Well, obviously, the creation of this
Authority would have to follow on a decision. For example, even in the
more — the most minimalist understanding of what — what's
permitted, you know, you do embryo research on spare embryos.
Now, as I said, the poll data seems to show that there is an overwhelming
majority of Americans that — that actually favor that. But
Leon is right that our large institutions, meaning Congress, will
have to decide, you know, on the legitimacy of that, and say that
this is something that we as a country want to do before you can
even begin to contemplate building, you know, a structure like that.
The kinds of delegated decisions that our agency would take would
not be that one. It really would be smaller kinds of issues. For
example, you know, we had this principle about chimerism. But as
we, you know, saw when we briefly touched on this issue, you know,
scientists create chimeric, you know, tissues all the time. And
is that legitimate or not?
And, you know, at what point does it begin raising, you
know, some delicate, you know, ethical kinds of issues? I mean, that
— I don't know whether that's the best example of this, but
there are, you know, other kinds of complex decisions, or the sorts of
things that the HFEA has actually, you know, passed judgment on it. Is
it legitimate to create a child simply to provide bone marrow for a
sibling? You know, that kind of issue.
And I just don't think that Congress has the
capability, the time, the interest, or the inclination to pass a law
saying whether that's legal or illegal. I think that that is, you
know, preeminently a kind of decision that ought to be made by this
kind of an administrative agency.
CHAIRMAN KASS: All right. I have Gil, Mary Ann, myself,
and then Mike.
PROF. MEILAENDER: Frank, a question, just a structural
question. When you were going through the — you had several things on
the pros and cons of the alternative approaches, and the first of the
alternative approaches was to use some sort of existing way of dealing
In two of the cons, there were "inadequate public participation"
and "hard to change bureaucratic culture." But those
don't return in relation to your own proposal. And I wondered
whether they ought not return in some ways.
In terms of inadequate public participation, if I
understand — now I wasn't sure, and you were going fast I know at
the end, I wasn't sure if I understood correctly, but the one thing
that you're adding is the consultative college, which almost
sounded like an internet undertaking?
DR. FUKUYAMA: Well, that part of it would be that.
PROF. MEILAENDER: Okay. I mean, if that's it —
DR. FUKUYAMA: No. And the deliberative panels —
I mean, a large number of deliberative panels, which are basically,
you know, structured town hall meetings where you'd have to
give a lot of thought to, you know, balance in terms of representation
and who's invited. Aand they would be deliberative, you know,
empanel people to discuss these issues for, you know, a couple of
days to —
PROF. MEILAENDER: Didn't you say that some of that
already occurs in other contexts?
DR. FUKUYAMA: Yes. I mean, you'll have some agencies
that will empanel one group to do this.
PROF. MEILAENDER: Okay. And you're just going to do
more of it, is what you're saying?
DR. FUKUYAMA: We're going to do much more of it, yes,
to make it much more representative —
PROF. MEILAENDER: Okay.
DR. FUKUYAMA: — and —
PROF. MEILAENDER: Okay. Well, I mean, at any rate it
seems to me there are some questions to raise there. And then,
granted, there wouldn't be a bureaucratic culture in place,
because you're creating something new. But wouldn't it
very quickly develop a bureaucratic culture? And a bureaucratic
culture precisely about some —
DR. FUKUYAMA: Oh, sure.
PROF. MEILAENDER: — some issues that perhaps need to
return regularly to public discussion rather than be bureaucratized?
DR. FUKUYAMA: All organizations have bureaucratic
cultures. I mean, it's simply the — I think the nature of, you
know, human behavior that there are informal rules that guide the way
that, you know, people cooperate and make decisions. And what you want
to do is not to avoid having a bureaucratic culture, you want to have
the right bureaucratic culture.
And I think the problem comes up, you know, particularly
when you talk about giving the FDA power to, you know, regulate things
that have an ethical component, that has never been part of what they
understood themselves to be doing.
And I think the experience is that if you've gotten, you know,
a group of regulators that really saw themselves as professionals,
that kind of stood apart from these kinds of ethical considerations,
it is really, really difficult to — you know, to get them
to change. And so what you would want to do presumably is create
an institution where the bureaucratic culture supported ethical
argument of the sort that we've had in this — you know,
in this Council. And that would be part of the tradition of, you
know, civil deliberation where you take seriously, you know, the
kinds of concerns that, you know, fall outside of the mandate of
the existing regulators.
PROF. MEILAENDER: But a whole range of positions might not
find their way into that deliberation, right? I mean, there
wouldn't be any reason to put some people on this regulatory agency
if they simply thought that some of the things shouldn't be done
that you were proposing to —
DR. FUKUYAMA: Well, yes. Again, you know, the composition
of the agency would have to — I mean, our view is it should — is the
goal should be that it should be as broadly representative of, you
know, American — the American public's views of this as possible.
And as I said, that does not amount to the views of the existing
well-organized interest groups, because we believe that those interest
groups are way too polarized and are actually not representative.
We actually think that there's a group, you know, much
larger group in the center that would be broadly supportive of this,
and that's what we want to try to get at through these
institutional mechanisms. So I don't think it's that — you
know, quite that whimsical. I mean, we really are trying to make this,
you know, both representative and deliberative.
CHAIRMAN KASS: Mary Ann.
PROF. GLENDON: Alfonso's question I think reminds us
of some conversations we had a while back about what other countries
do. I noticed that Frank refers to the Canadian and English systems,
but deliberately bracketed the continental.
But if you recall, in a previous meeting, we saw that all
of these matters are heavily, strictly regulated in the Romano-Germanic
systems. And so I think that — in my own experience, when I talk
about these matters with Americans, they are surprised, as Alfonso was,
that there is no regulation of that whole list of items that Frank just
So I'm wondering, Frank, whether part of your project
— I guess I'm hoping that part of your project, even in the
deliberative stage, would be to try to use your deliberations to raise
the public profile of the issue. I mean, to this day, to this very
day, we have people in the United States who think that Roe v. Wade
only regulates the first trimester of the abortion — of pregnancy.
So this misunderstanding has been deliberately fostered by
groups that have an interest in fostering that misunderstanding. But
it seems to me the same is true here, that as long as the — the actual
state of affairs is not well-known, there are a lot of — of mice about
So I wonder if you're thinking about, even at this stage,
not just having closed meetings, or relatively closed meetings,
but this is the kind of thing you could get on television with,
you could — I mean, op-eds, I don't know how many people
they reach, but I really think this is a hot subject. And that shock
response that Alfonso had is a response that you would find in a
more general public and that you would — there would be a
way of educating the public to get better quality responses to the
polls, and, in turn, get better ideas about the question that you
and Jim were talking about.
There are many tools in the legislator's tool box. And
at this point, I think it's very difficult to say which is the
right one, or what combination. That's a very difficult technical
question that is different for different areas. But I think you might
— if the public discussions should — could somehow be stimulated, you
might get some guidance on the technical regulatory question.
DR. FUKUYAMA: Yes, if I could just say I think you're right,
and one of the central purposes of our project was just to get this
R word out into the public discussion, because, as I said, you know,
I think actually if — John Evans wrote a very interesting
book about the history of the bioethics — the whole bioethics
But I think in some sense the reasons that you have
bioethics advisory councils and commissions, and so forth, was a
deliberate decision by the scientific research community and by the
biomedical industry back in the 1970s to actually stave off formal
regulation by, you know, in some sense inviting this self-regulatory
model, together with, you know, essentially toothless advisory
And while I much enjoy sitting on this panel and hearing
the discussions, I just think that that's not an adequate, you know
— but there's been — but that strategy has been actually very
effective, because any time someone has raised the question of
regulation people say — you know, react as if they've seen, you
know, the devil or Satan himself, and,you know, how can we talk about
this? Whereas, in fact, you're absolutely right that virtually
every other developed country has, you know, addressed this much more
seriously than we have.
And so part of I think our purpose — and I'm glad that
we have this opportunity to, you know, get this out, to simply put
this in front of people and say, "Maybe you don't like
our particular, you know, version of it, but I think we got —
this is the real issue that I think we've got to address."
And not — and, you know, the more philosophical discussions
I think are extremely important and rich.
But as a matter of public policy, I think this is where
we've got to — you know, we've got to turn at this point.
CHAIRMAN KASS: I am next, and then I have Mike, Peter,
One of the things that I like about the proposal, and in a
way the idea behind the proposal, is precisely the beyond bioethics
notion. And the recognition that these questions are not questions
that should be solved by some marriage between scientific/technical
expertise presenting the shape of the problem, and so-called ethical
expertise resolving it.
Anecdotally, there was a meeting at the National Academy of Sciences'
Panel on Stem Cell Research, and I gave a presentation there in
my own name. And there was a dinner the night before, and one of
the scientists there said, "Look," he said, "you
fellows really could solve all of your problems on this Council."
I said, "Oh, really?"
He said, "Yes," he said, "you should just
change the membership." And I said, "Yes." And he
said, "Yes. What you have to do is appoint ethicists, appoint
bioethicists." And what he really meant was the bioethicists that
sit on the committee of the hospital where he is, where there really
are no fundamental disagreements, and it took me half an hour to
explain to him, look, the reason we have differences of opinion here is
that there are real issues on which people are — are deeply divided
and that are not somehow resolved by appealing to expertise.
And Gil, in a very nice little piece, responded to
complaints against this Council that we had somehow politicized science
or politicized bioethics, and he turned that accusation into a kind of
praise, if by politicization it meant away from government by experts
in these matters and a return of these questions to the polity as a
So I applaud that, and I applaud whatever measures would be
built into this to enlarge the public consultation, the public
participation. These are questions that really affect the well-being
of all of us, though as we learned this morning one shouldn't
exaggerate the ability of the public simply to understand or simply to
decide with projections about the future. I mean, there's — one
should be very modest about this.
My difficulty comes with the question of what the
conception of — not what the moral principles are, but what the view
of moral judgment — the kind of moral judgment that such a body, since
the final judgments will be left with these commissioners or with the
commissioner as you will.
Sometimes, not in your account, but sometimes people say
this really is a test for rule of the wise, not the experts mind you,
but for people who are, you know, somehow the repository of the
greatest wisdom that we can have about these matters. And that should
be the criteria for appointment.
There are people in this room who think that conditions of appointment
should be governed by those capable of sound moral reasoning. There
are other people — in fact, the President when he met with
us, I don't think I'm telling tales out of school —
exhorted this body — we can debate whether we've been
this or not — not to be sound moral reasoners, and not to
be philosophers, but to be the nation's conscience in these
None of those things do I hear from your proposal. What I
hear is something like a high-class National Opinion Research Center,
which tries to take the temperature of the public and not function as
the Burkean representatives of the public as we heard this morning,
but, in fact, to find out where the public now is on these questions
and take it there.
And maybe that's right, and maybe that's what it
means turning these matters over to politics. And it means perhaps
finessing questions of inflexible moral principle and allowing this
utilitarian country to, you know, find its most comfortable bottom.
But I guess I'd have to say that I'm slightly
disquieted with such sort of large matters on the table to say that
what you really want here is a group of people whose main virtue is
they learn how to take the public temperature and blow with the wind.
Now, you haven't said that, but it seems to me what —
what is there in the conception of this? How does somehow taking —
taking the opinion polls, or having these — you know, letting the guys
who have access to the internet exercise their undue influence on this
process, and actually trying to govern wisely in these matters,
granting that we don't have philosopher-kings to rule, nor
necessarily should we?
DR. FUKUYAMA: Well, that's a very good question.
In a sense, that's why we had that two-tiered structure, because,
you know, Jim's observations about the problems of commissions,
you know, being well taken. You know, the idea was that you'd
have a — actually, a smaller deliberative body that was composed
not simply of the appointed stakeholders but, you know, of genuinely
independent people that were capable of some degree of this kind
of, you know, moral reasoning, and that would be selected for their
ability to do that, that would actually have the real — that
would have the real power to — you know, to make the decisions.
And all of these new — all of the new public participation
mechanisms were not the point of that — you know, that smaller
group was not simply to take the pulse of the public. But it was
to take their input but use their own judgment — you know,
combine that with their own judgment to — you know, to deliberate
and to come to judgment.
So there really is a kind of two-tier — so there isn't
a mechanical sense in which, you know, there are people with real
statutory power simply trying to do this sophisticated polling.
But it's something I think a little bit more balanced between
— because I think that the other model where you simply delegate
it to these wise men or women has also got a lot of problems, because,
you know, they can get quite out of line with what is often the
common sense, the common moral sense of, you know, the broader public.
CHAIRMAN KASS: Good. Jim, do you want to add something to
this point? Please.
PROF. WILSON: Yes. I don't really follow your point,
Leon, because I may have underestimated the significance that Frank
attached to these deliberative panels and the consultative college, and
I hope I underestimated because I really think that's not the best
part of his proposal.
I think the best part of his proposal is to go to Congress with
whatever political argument will get him there. As Mary Ann said,
the average public person needs to be told that we are the only
country in the world that doesn't regulate any of these things
and get Congress to pass a law.
Now, Congress may well pass a law that says we're going
to create this agency, and we're not going to allow research
cloning. But it will regulate all of these other things. I don't
know how the debate will come out, but that's one very likely
outcome. To me, that would be okay, because we would then begin to
oversee other things.
Now, the other things that would be overseen would not be
established by some government-sanctioned National Opinion Research
Center. These will be all things that Congress would decide. Congress
is very ginned up about this question. They would start passing rules
about chimera and hybrids and sex selection, and all of the other
things that the ART clinics now think they self-regulate, but, in fact,
So by the time the law was finished, and I would imagine it
would be conservatively 50 single-spaced pages long, the Congress would
have told the agency what to do. And what the agency would wind up
doing is administering those laws.
Now, I personally would hope they would allow research
cloning, but I'm not optimistic. But even if I'm wrong on
that, it seems to me the debate will not be between Congress passing a
general law that says, "Seek the public interest and implement
it," and leaving to the agency the job of defining it. Congress
will define, as best as it could, all of these matters, and the agency
I imagine will have relatively little discretion.
CHAIRMAN KASS: Mike Gazzaniga, then Peter, then Paul.
DR. GAZZANIGA: Yes. So let's roll the clock back here
a little bit and be concrete. It was almost two years ago — two years
ago that we had our little 10 to 7 vote, where 7 of us were against
cloning of all types, 7 of us were for going ahead with biomedical
cloning, with regulations, and we didn't specify what that meant.
And three — and two of them are here — Frank and Paul
— were for — didn't have an ethical problem —
but wanted a moratorium until regulations were in place. Is this
what you meant by "regulations in place"? So the question
I have is: is this the kind of thing that Paul meant? Is this
the kind of thing you meant?
And we can find out from Frank is — which all of a sudden
means that we have 10 members who are for biomedical cloning, and
not this, with the proper regulations in place. Because I didn't,
at the time, really understand what we meant by that, because I
spend half my life trying to get around regulations. So I —
I have an allergic reaction to the regulations.
CHAIRMAN KASS: What did you do with the other half?
DR. FUKUYAMA: Just on that one — you know, I didn't
write a personal statement at the time that we took that vote, so I
didn't explain my position. But, you know, my position was that I
was in favor of a moratorium, because I did not think it was safe to
proceed with this until you had a regulatory structure in place, and I
thought it would take at least four years to — you know, to produce
Now, that doesn't mean I'm in favor of doing it now, because
this regulatory structure is just a proposal. I mean, I think you
really do need to make some progress in having in place an institution
that will actually provide some real safeguards, not the Proposition
71 kinds of things, but some real safeguards.
And if we are into that process, and I'm convinced
that, you know, that's reality, then in fact I will change my vote
and, you know, vote with you. But I'm not ready to do that now,
because I don't think we're at that point.
PROF. GEORGE: I think it's also true, isn't it,
that Rebecca's argument was not an argument that had to do with
putting a regulatory structure in place. She's got a personal
statement on it, and I don't think that the answer Frank just gave
corresponds to what she said.
CHAIRMAN KASS: Peter Lawler, and then Paul McHugh. And we
are getting close to break time, so if people want to add —
DR. LAWLER: Yes. I think I would be most for this in the
way Jim Wilson just laid out. As Congress would legislate extensively,
and the point of the regulatory agency would be to administer the laws
Congress had passed, because this is — it's an odd thing about
America that on this issue the left is libertarian. You would think
that the left, as the body that — the climate of opinion that wants to
regulate the excesses of capitalism, would want to regulate here big
time because capitalism has so many excesses.
So in order for this to be possible, I think a bill that narrowly
passed Congress because of a Republican majority and Democrats from
red states voting for it out of necessity, wouldn't give us
what we need. The left has to be converted in some respects. Mainstream
Democrats have to be converted in some respects to the idea that
regulation in this area is appropriate.
And it's strange that our country has been transformed, that
on these crucial cultural, social, life issues, the Democratic Party
is the libertarian party now, because to listen to the Democratic
Party you get this opinion: You have sensible people, and you have
religious nuts. And the sensible people are for no regulation at
all, even though — so the sensible people are not to be told
what goes on in Europe, and even in Canada and Britain, and so forth.
So the first step here is for someone — Frank and his
friends — to — to enhance public awareness of this. This, more than
other areas of capitalism, demands regulation because of the great
possibilities for the destruction of life and for tyranny in this area.
CHAIRMAN KASS: Do you want to hold off, Frank, and
we'll get Paul McHugh's comment, and I think that's where
we are. So we'll —
DR. McHUGH: Yes, I have a comment and a question. First,
the comment is that, yes, Mike, this is what I was looking for.
I'm looking for the building up of a regulatory system — a
regulatory system that is responsive to the American people through the
Congress, and should lay out right off the bat what we're doing and
start putting some sense into this free market system that has all
kinds of abuses to it.
And you know that, though, as well I believe there is a
difference between in vitro fertilization and the use of those embryos
and somatic cell nuclear transfer and those things. I won't, once
again, raise the clonote, but it lives.
Now, I have one question, and that is: why do you start
off by saying that embryos have — the whole idea about this is
intermediate status for the embryo? You just get people's dukes
up. Why don't we just get started and saying on the regulatory
business, "We need a regulatory agency. We have Jim's genius
and your genius to start putting these things together and make it
happen." What do you want to get people's dukes up for? So
that's question one.
And then, it's just a question of fact, and that is this issue of
polling, and views that the American people have, which have been
so often wrong. On page 10 of your things, you confused me when
you said that the interest groups demonstrate that the public attitudes
towards research cloning are that fundamentally people oppose it
two to one. And then you come down here and say what human embryonic
stem cells, though, are — polls show that they are for embryonic
But the question is being asked there of them, from which you
have developed that idea, is "should excess embryos be used
in medical research?" And the operative word there is "excess."
And if in the process of asking that question you — you told
people, "by the way, we're going to produce these excess
embryos every time we have an in vitro fertilization experiment,
because we're going to make 8, 10, 12 of them, and they're
going to be around, and we're going to continue to make these
people— do you really want to make these embryos? " What
would the American public say? I believe the American public would
say, as the German people say, no IVF unless you're going to
implant them. And why not?
DR. FURGER: If I may, I mean, it's in part a matter of
how these questions have been phrased. But generally speaking, the
surveys have tended to distinguish between a possible use for research
purposes of excess donated embryos as a self-contained question on the
one hand, and the possibilities of — the possibility of conducting
research cloning as a separate issue.
Now, obviously you can combine these two things. But if
you ask this question in a separate manner, you realize that when
cloning is implied, there is much more ambivalence about the procedure,
whereas a semi-pragmatic approach, the use of excess embryos for
research purposes, you know, it's a lot less —
DR. FUKUYAMA: Existing ones that are already in — you
know, being stored, cryogenically stored.
DR. McHUGH: I mean, that's something that we ought
to be talking about broadly in the public. And building up a regulatory
agency and hearing from the Congress as to whether they think the
excesses are going to continue to become excess — because
whether we're going to continue the process of in vitro fertilization
or not becomes a matter for regulation.
But, anyway, I just think the way you ask that question to anybody
in the — in the population, you ask them — "Well,
they're going to die anyway, so there you — let's
do something with them." Everybody gets up and says yes.
But if you say tomorrow, "Well, look, we're going
to start producing these so-called excess embryos because, after all,
they're accessible to us, and we ought to build them. And when we
do them, we're going to implant some, and we're going to chop
the others." Then, I think the American people will probably rise
up, like they say about research cloning here and say, "Not on
But that's to bring us back to what Alfonso — what you
said you didn't want to develop here. Answer me this question:
why do you want to start this off by saying something which raises a
red flag about the intermediate status of the embryo? Just tell me
DR. FUKUYAMA: Well, that's — it's very simple,
because I don't think you can sneak it by people.
DR. McHUGH: Oh, I see.
DR. FUKUYAMA: I mean, this is a proposal to create a
regulatory agency that would legitimate stem cell research. There is
just no — and it will involve embryo destruction. The most limited
form of that is — is using, you know, preserved embryos in existing,
you know, embryos in IVF clinics.
But if you believe that that is illegitimate, period, then
you're not going to like this proposal. And I just didn't
think that it would — you know, I mean, so I just thought it's
better to be up front about the fact that —
PROF. WILSON: Well, Frank, there's another strategy.
The other strategy is to make the list of all of the things that ARTs
don't like and don't approve of, but are done anyway, and make
those the subject of federal legislation.
I mean, the only way you're going to get Congress to
pay any attention to this bill is to call attention to widely-admitted
abuses, regulate them, and then cross the next step, if you can cross
it, which is to say, well, we've got a regulatory agency, it's
working reasonably well, shouldn't we be allowed now to use excess
embryos from IVFs? You don't want to start with the IVFs. That is
a political loser. Start with the abuses.
I mean, I don't know why we're sitting around
having a talk about practical politics in Washington, D.C. It seems so
I'll shut up.
CHAIRMAN KASS: That's why we bring people from
California who know something about it.
Let me make one — just one — I lost it. It wasn't
Let me just thank Franco and Frank for bringing this —
this proposal back before us for discussion. We'll adjourn until
Those of us meeting for dinner, Primi Piatti is at 2013 I
Street, one street to the north and about five streets to the west.
And you're better off walking on I Street than on H, where
there's construction. Tomorrow morning we start at 8:30.
Oh, I remember what it was. On this business about the
stem cells, tomorrow morning we're actually going to hear some
interesting things on this subject, which might provide a way forward
that doesn't require one to lead with one's chin, and
nevertheless provide some suggestions that if all goes well might
command some interesting assent around here.
So let's look forward to that presentation tomorrow, as
well as the presentation from our Canadian colleagues. Let's be on
time for them at 8:30 tomorrow.
The meeting is adjourned.
(Whereupon, at 5:32 p.m., the proceedings in the
forgoing matter were adjourned, to reconvene at 8:30 a.m., the following