Meeting Transcript
September 9, 2005
COUNCIL MEMBERS PRESENT
Leon R. Kass, M.D., Ph.D., Chairman
American Enterprise Institute
Benjamin S. Carson,
Sr., M.D.
Johns Hopkins Medical Institutions
Rebecca S. Dresser,
J.D.
Washington University School of Law
Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School
Francis Fukuyama, Ph.D.
Johns Hopkins University
Mary
Ann Glendon, J.D., L.LM.
Harvard University
Alfonso Gómez-Lobo,
Dr.
phil.
Georgetown University
William B. Hurlbut, M.D.
Stanford University
Peter A. Lawler, Ph.D.
Berry College
Paul McHugh,
M.D.
Johns Hopkins University School of Medicine
Diana J. Schaub, Ph.D.
Loyola College
INDEX
WELCOME AND ANNNOUNCEMENTS
CHAIRMAN KASS: Good morning. Welcome, Members of the Public,
Council Members. Thank you very much, once again, for last evening.
It's my great pleasure to start this session of Council by welcoming
as our guest for today and soon to be new colleague and Chairman
of this Council, Dr. Edmund Pellegrino, who sits to my left. Dr.
Pellegrino, if he's not already known to you all, should be.
He has been a physician for more than 50 years, still practicing
medicine, where he's Professor of Medicine Emeritus at Georgetown
University School of Medicine and makes rounds on the wards.
November, I think, is the next tour of duty. He has been one of
the country's leading thinkers and writers on the philosophy
of medicine, the doctor/patient relationship, the founder of —
co-founder of the Journal of Philosophy in Medicine and one
of the clear thinkers and wise guides in the area of ethics and
medicine.
He's had administrative positions with organizations, I'm
sure, larger than the chairmanship of the President's Council
on Bioethics, the last — well, not the last, one of them being
President of Catholic University, was Vice President of Yale New
Haven Hospital, ran the hospital and I can't tell you how delighted
I am that Ed will be replacing me in the Chair. And to quell any
gossip from anybody who scribbles, I will be remaining as a member
of the Council and will be delighted to continue working with all
of you and under Ed's leadership and guidance.
So please join me in expressing our warm greetings to our
new colleague.
(Applause)
CHAIRMAN KASS: I've asked Ed to sit in this morning
because the two topics for today are of a special interest for us
going forward. The first session is entitled "Taking Stock:
Looking Back and Looking Ahead," in which we will have a chance
to reflect on what we've done together these past four years
and to offer some suggestions and thoughts about what we might do,
suggestions we present amongst ourselves but also for Ed's consideration
as he contemplates the new directions.
And the second session will be on the "Medical Vocation Then
and Now," a subject not only dear to the new Chairman's
heart but absolutely central to many of the things that we've
been talking about and will talk about in the future. I'll
introduce that session when we go forward. I think we should divide
this session really into two parts. It's very rare for any
group of people, except in therapy sessions, of group therapy sessions,
to actually sit together and reflect openly and in this case, in
public, on the work that we've done and to try to think hard
about what it means to try to do public bioethics today with the
kinds of issues that we face, not primarily to settle scores or
to deal in anything petty, but to see if we've somehow learned
something that could be put to use in making the work better as
this Council goes forward.
And then second, I think we should do as we've done on previous
occasions, talk about possible topics of importance that this Council
might continue in its third term. Some of those things surfaced
yesterday and I thought you might like to bring them back. This
is sort of strange, but I would like to ask — so as to save
time, you've been given as a background paper, the talk that
I gave a year ago and is now going to be out in the Kennedy Institute
of Ethics Journal within a couple of weeks. So as not to waste
your time but because I would like to get certain things in that
article in the public record, could I ask unanimous consent to put
into the minutes of this meeting as if read a few of those
general reflections at the end so that people who are not here
but who know us only through the transcript of the meeting and will
not see that paper, can at least have one man's perceptions
of these matters. Is that all right? Good.
Then let me introduce the discussion today, the more reflective part
of the discussion with these comments. This Council has been guided
really by two inter-related purposes. The first purpose has been
to pursue what we've been calling a richer bioethics. That
is to say, to consider not just the technologies or the way in which
they give rise to questions familiar to either clinical medical
ethics or to general sort of common concerns of a liberal democratic
society, but also to see how these things which impinge upon our
humanity, in fact, touch our personal aspirations, our human longings,
our duties, our — the way we actually live life every day
and in deep and serious ways.
We've tried to think about what it means to suffer, what it
means to welcome a child into the world, what it means to perform
with excellence, what it means to respect life, what it means to
age well and care always, and almost everything we've done has
been informed by attention to these anthropological and not merely
ethical matters. And I don't think that this Council would
have satisfied itself with the view that all that bioethics can
say is that everyone should make informed choices for themselves.
As a public bioethics body respecting, to be sure, the pluralisms
of the society, we've been asked to offer as the charge this
Council had, the results of serious inquiry into the human and moral
significance of these advances and that we've tried to do. And
speaking for myself, I think that's something that we should
be very proud of.
The second purpose informed by the first, but not always easily
or comfortably related to it is to try to be useful to those who
are charged with making public policy in the age of biomedical science,
on issues ranging from stem cells and cloning to the regulation
of biotechnologies, to the care of the elderly, the demented and
dying.
We've tried to take seriously our mandate not just to think
but also to guide, and not just to think about ethics but to think
also about self-government on issues that are both ethically profound
and scientifically complex. It's, I think, not for us to judge
our achievements or failures in this area but it remains for me
a challenge and a puzzling question — what's the relation
between this search for a richer bioethics on the one hand and the
desire to be genuinely useful in the concrete decisions that public
policy makers face, and in particular the topic of regulation.
We've tried our hand at this. We are quite concerned that
we live in a society which is largely unregulated when it comes
to all of these revolutionary areas of biotechnology. And we know
that there are obstacles to going forward here, but it seems one
of the things that is very much worth pondering as we go forward,
can we hold these two tasks together and could we do either or both
of them better?
That's to prime the pump. I really — never mind that
there are scribes possibly in attendance. I think we should have —
this is not a time to pat ourselves on the back. It's a time to
try to figure out what have we learned from trying to do this work
together and what could we do in order to do these things better?
MALE PARTICIPANT: This is the first time in history
you've completely silenced the Council.
CHAIRMAN KASS: No, no. I knew it was a good question.
You ask a good question in class, nobody speaks. Diana, was that an
offer?
PROF. SCHAUB: I don't know if it addresses what you've
asked us to address but I think we ought to think about whether
we have done enough to reach the public. I mean, I think the Council
has done an incredible job on the score of a richer bioethics, but
has the public been sufficiently enriched by what we have done?
I mean, have we gotten it out to them? So I mean, I just wonder
if there are small things that — I mean, that we could do
more in the way of meeting that charge of educating the public and
informing the public.
I mean, the books are out there but people are not always
readers. So, you know, ask ourselves, you know, are these books
getting into the hands of the people that we want them to get to and
for those who are disinclined to read, are there other things that the
Council could be doing? I mean, I know that individuals do a lot of
public speaking to, you know, university crowds and you know, other
kinds of fora, but people do that as individuals. And the things that
I've done like — done in that line to alumni groups and, you know,
college audiences, there's a great deal of interest and there is a
great deal of ignorance.
So I mean, I wonder whether the Council could do something like,
you know, take this show on the road, you know, have a — these
are public meetings. Stage the public meeting not at a hotel in
Washington, D.C. but at a major university or I don't know,
I mean, it would just — you know, trying to figure out are
there other things that we could be doing or at the risk of being
too political, part of the charge is to inform policy makers and
legislatures. Are there acceptable ways to run information programs
on the books that we have — books that we have written for
you know, staffers, congressional staffers?
CHAIRMAN KASS: Thank you. This thought has — I'm
not going to editorialize after every comment but on this particular
point, it's been a concern of mine from the beginning and we've
been so preoccupied in a way with doing the reports that there hasn't
been a lot of time and energy for these things, but to send even
staff out with the reports to college campuses and do things like
that was one thing that we considered. I'd also considered
putting together a small group of journalists and have seminars
with them on the reports. I mean, just make them read the things
instead of the last page, and have regular seminars, but just there
wasn't time and energy enough to do that given these other things.
But a lot of what we — a lot of what we do insofar as it's
not — well, two things, three things. First of all, if one
is speaking about the policy makers directly, Charles Krauthammer
told me when I took this job, "In Washington if you want to
educate anybody, you have to tell them what to do, so a report with
no recommendations is politely ignored."
I mean, people look and say, "Is there anything here I really
have to pay attention to? I'll read it when I have time",
and these people have lots on their plate. So — but then
the people who really do the educating are a couple of dozen journalists
for, you know, medical journals, Science, Nature, the general
press, our fine observer, Mr. Saletan here, who is a very astute
reader of these things, and if one could sit down with this group
of people and get them to go past the things which very often make
up the stories about these matters to get them to deepen the accounts
that they give, there would be a way in which one could multiply
the educational effect through the people who actually do a lot
of the public education for worse and sometimes for better. And
that's, I think, something worth thinking about.
There was a third thing, but the gray cells are gone, so
let it be. Please, Robby?
PROF. GEORGE: Leon, I think the largely unwritten, even
unremarked, story of the Council was there right at the beginning
and it's the remarkable diversity of points of view on the Council.
The President's willingness to appoint to the Council not only
people who agree with his fundamental moral outlook on the questions
before us, but also some who don't and some who deviate very,
very sharply indeed from the President's own perspective.
When it became clear to me that that's the kind of
Council we would be, I wondered what the result would be in respect to
the reports that we would be able to put out and what the value of the
reports would be. Since most, perhaps all previous bioethics councils
have had more uniformity of viewpoint on them, they were able to write
reports that took a point of view and made an argument and advanced
that argument quite vigorously. Our reports have not been shaped in
that way precisely because of the diversity of points of view on a
number of occasions. So I wondered whether they would be valuable.
Well, my conclusion, now that we have a good deal of experience with
them is that, in fact, it is very valuable to lay before the American
public and particularly before people who are genuinely interested in
these issues, the best arguments to be made on the competing sides of
the question and the best available information as to what the plain
facts of the matter are.
In our initial report on cloning, although we were very badly divided
as a Council, we were, I think, able both to lay before the public
the strongest arguments that were available on the competing sides
of the question and also to clarify the underlying facts about which
there was floating around out there a lot of misinformation. We
were also, and I think a very, very important contribution neglected,
unremarked, able to clarify the language and to be clear on what
we were talking about at a time when the need for such clarification
of language was very, very important. I hope that we will continue
and I am confident that under Dr. Pellegrino's distinguished
leadership, we will be able to continue to produce work of this
quality and accomplish what we have been able to accomplish with
the reports that we have done this far. And when the day comes when
this Council wraps up its work and perhaps, a new President of whatever
party is elected and thinks about how to constitute such a Council
if he or she wishes to have a bioethics council and I suspect that
bioethic councils will continue in our future, I hope that a lesson
can be drawn from the diversity that we've had on this Council
and the valuable work that's come out of the diversity on the
Council.
CHAIRMAN KASS: Thank you. Frank Fukuyama.
PROF. FUKUYAMA: Well, in the spirit of Dan Foster not wanting
to grow extra muscles by patting ourselves on the back, I guess
I do want to register my own, you know, one area of disappointment
in what the Council has done. I accepted Leon's invitation
to become a member of the Council, with really one purpose in mind,
because I wanted it to address very forthrightly the regulation
issue. And my hope at the beginning of the Council had been that
this might develop a little bit like the Warnock Commission in Britain
in the 1980s which, you know, studied the upcoming, you know, revolution
in biotechnology and then recommended creation of the agency that
became the HFEA, the Human Fertilization and Embryology Authority
in the UK.
And I had hoped that our work might be able to lead in that direction.
Now, I think it became clear as we started very seriously delving
into the regulation issue, that we would, you know, touch on the
margins of that but I think that politically, I mean, it's not
the fault of this Council. I think it's just American political
culture. There's a kind of very deeply rooted anti-regulatory
bias on the part of both the left and the right in this country
for different reasons, you know... to produce the kind of situation
that we have. And I think on the Council, the reason we couldn't
go forward was a number of people, Gil and Alfonso, you know, raised
this question, well, if you don't know actually what you're
going to regulate or what the regulators are going to do and give
them, you know, those instructions substantively, how can you say
you can build the authority.
Now, I actually think we could have gotten past that because the
HFEA in Britain regulates and permits stem cell research and research
cloning. The Assisted Reproductive Agency of Canada, this recently
established body, prohibits research cloning and very strictly regulates
stem cell research and they have almost the identical institutional
structure. And I think it would have been possible, actually, to
recommend the creation of an agency with the appropriate powers
and domain and specifications and actually then kick the ball down
the road to the political authorities to decide, you know, whether
it looks more like the Canadian agency or more like the British
agency in terms of whether it either permits or restricts research
cloning. But, you know, it was a very difficult hurdle to get over.
We did, I think a very respectable job in the "Reproduction
and Responsibility" report where we actually, as a way of trying
to get past the cloning deadlock in Congress — I mean, in
fact, we made multiple efforts to suggest to the political authorities
concrete ways of, you know, breaking through the current political
logjam so there would at least be some effort on the legislative
front to address issues that we all agreed, you know, needed to
be addressed.
I believe, however, that this is still an area that we did not,
you know, push the ball all the way up the hill. That was one of
the reasons that I got independent funding for the study that I
presented to the Council last December, where I just went ahead
and on my own I kind of laid out what I thought this kind of an
agency ought to look like and I think that's still on the national
agenda.
Now, being politically realistic, I think that what's going to happen
is that, you know, various people will make suggestions along these
lines and then at some point, some, you know, doctor is going to
try to clone a human being and it's going to lead to some deformed,
you know, horrible outcome and then people are going to look and
say, "Well, you mean to say that this was legal in this country,
that this isn't regulated?", and you know, people saying,
"Yes". Well, in fact, that is the case, that we don't
have any rules whatsoever that prohibit this sort of thing.
And just as in — you know, as it took the Enron meltdown
to discover that we actually did have very good, you know, accounting
standards in this country, I think then people will be willing to
politically take up this issue in a more serious way. But I do believe
that this still remains on — you know, on the agenda for not just this
Council but future ones to think, you know, as Leon was saying, more
concretely about not just legislative acts, but institutions that will,
you know, help guide us and kind of structure political decision making
in this area as we go on into the future.
CHAIRMAN KASS: Thank you. I would — I guess while
people are collecting their thoughts, I would underscore what Frank
has said but give, maybe one additional comment. It — it's
been one of my frustrations here, Frank, as well, though I saw very
early on, I think it might have been Gil, Gil said he'd be all
in favor of a regulatory body if we could — if he could identify
the goods in the name of which the regulatory body would regulate
and also appoint its members, otherwise he wasn't sure that
one wasn't going to be as it were, giving carte blanche to something
about whose moral rightness he had grave doubts, and it's too
bad, in a way. It was inevitable but too bad that we tackled the
regulation question in the absence of any kind of — maybe
we should just call it to begin with "oversight monitoring,"
which we don't even have other than on safety and efficacy criteria.
It's too bad that we tried to do that around the series of
innovations and technologies where the embryo stood in the center
of the road. And the embryo is really like Solomon's baby,
we're not going to split the difference on that one. Could
you do something to think about regulation with the off-label uses
of drugs? Much harder because those uses are decentralized. You
don't have any — it's much less visible and much harder
to get ahold of. If one were really interested not in the particular
area that had some kind of oversight and regulation, but the principle
that governance here means not periodically trying to ban something,
but to try to separate the better and worse uses of these innovations
and that it ought to be done by public means and not by accident,
then it seems to me the real task, recognizing the political difficulty
until there might be such a biotechnical Chernobyl, would be to
try to find some area where one could think about this without having
such a hugely divided view as to what the — what the morally
right thing is.
And I have to confess I haven't really thought this through
at the bottom, but it's not obvious to me. It was partly an
accident of what we started on and of the cloning report that we
turn to this intersection of genetic knowledge, reproductive technologies
and embryo research as the area to try to do this, but it became
very clear after a couple of meetings that at least in this body
and this body being somewhat representative of the larger community,
that intractable question was going to at least for the time being
stand in the way of getting some kind of an agreement.
So it is a disappointment of mine. It's a
disappointment that comes also with recognizing the reasons why we have
this in addition to the American hostility to regulation, the fact that
the scientists and the biotech people don't want government
mucking about at all, but I do think that it's worth all of our
attention to see if we could find some other area appropriate to things
that we're doing where it might be more — where we might be more
successful in suggesting some kind of oversight and monitoring body
and, perhaps, even some regulation. Gil?
PROF. MEILAENDER: One thing I want to note, this is not
the main point I wanted to make but in relation to Diana's comment
is, I had several times suggested that we should meet in other cities.
It's logistically sort of difficult and I think that was one of the
discouraging factors, but I thought it would be interesting to do
that.
But the main thing I want to say may seem perverse to
Frank, for instance, maybe even to our distinguished Chairman, but for
me, the — and I'm even willing to grant, I guess, before I say it,
that this may be to some degree a matter of temperament, I guess,
though it is in some ways also for me, anyway, a matter, you know,
having taught for 30 years, the day before I left for here, I got an
e-mail from a student I taught has to be 20 maybe 25 years ago, I had
to pull out my file of old grade sheets to figure out who she was, but
who had read some stuff of mine and was helped by it recently and wrote
me.
If you do — if you teach this kind of stuff, your clientele comes
and goes and if you'll pardon the theological formulation, you
have to live by faith and not by sight. It doesn't pay too
often to ask whether you're accomplishing anything. You just
sort of have to do it and hope that somebody out there is benefiting
from it. And maybe over the decades this has had an effect on me,
but I very seldom ask what I'm accomplishing. I don't like
to ask that question. I prefer just to kind of let it go and see
what happens. And for me the most satisfying moments have been
when we haven't worried about whether we're going actually
to accomplish something in a policy sort of sense but have simply
tried to sort through a question and say something about it.
Now, it may be true, Leon quotes Charles. It may be true that
that falls into a black hole. I don't know about that but on
the other hand, in the moments when we have attempted to shape policy,
no one could claim we've been extraordinarily successful in
doing so. So I think that actually the best work we've done
has been in our attempts just to sort through hard issues and not
worry too much about the implications. The moments when we've
tried to come down to a point have several times been excruciating
but also, I don't know that they've gotten us very far.
So I don't think it's a bad thing that this should be, as
Robby said, a very diverse body, that we should not necessarily
be able to come to a point that it should be somebody else's
responsibility to try to accomplish something, and that we should
just think and talk and argue about questions. That doesn't
seem to me to be bad and I understand that it may seem perverse.
The one additional thing that I'd add is that — and this
is the place where I do have a little different tact from our Chairman's.
See, I don't think of the — what I grant are the unresolvable
life questions or whatever you want to call them, as sort of getting
in the way of making progress on other things. I just think they're
basic. You know, if you're going to talk about bioethics, sooner
or later you're going to talk about whose good counts among
us and if the price of recognizing that those questions are basic
is to be a little — to accomplish a little less, that's
okay with me, you know. I — that's sort of the story
of life as far as I'm concerned.
So I wouldn't want to — I wouldn't want to, as it
were, bracket those basic questions just in order to try to get
somewhere because I think usually you don't know where you're
getting actually and you only find out 30 years later anyway and
it's therefore, a bad idea to make that your chief priority and I
think we — a lot of times we haven't and that's good and those
are the best times as far as I'm concerned.
CHAIRMAN KASS: Alfonso.
DR. GÓMEZ-LOBO: In many ways, I feel in a similar manner
as Gil does. Accomplishments are something to be taken into account
but not too seriously. But, however, I would like to, perhaps rehearse
some of my differences with Frank on these matters. Even if one is not
out there to be successful, still I think the question of regulation is
important and I think that, of course, the political community has to
find regulations for the protection of some of its most important
values. I wouldn't doubt that for a second.
And my real problem with the British Human Fertility and Embryology
Authority is just how it works. That's where my main problems
are. First, I have a very, very poor opinion of the Warnock Report
itself. I was astonished when I first read it how shallow it is
philosophically. It puts forward a very simple utilitarian argument
then a moral sentiments argument and leaves it at that and then
comes down on the 14 days without further ado. I mean, it's
really astonishing how little reflection there is. For instance,
by comparison, and I'm afraid I'm patting ourselves on the
back again, our reports are much more careful in the — in
laying the foundations for whichever way the regulation may go.
It's just incredible that the British Parliament should have
taken that report as is, as basic, and passed the bill on those
terms.
But again, since we are dealing with such a fundamental
value for our society for the political community, value of life, I
just don't see how a committee of, I don't know how many
members the British committee had, but 20, 30 people, are making such
important and drastic decisions on their own authority. Now, there is
guidance and there's the possibility of guidance as Frank has
reminded us of the Canadian case, but if I could have my way, my
preference would be that there be regulation at a much more fundamental
level so that it would not be a small group of people that were making
— would be making these decisions.
And if we could move in that direction, that would be just wonderful
in the second stage, but again, it's not going to be possible
without a much deeper study and discussion of the grounding issues
here. Thank you.
CHAIRMAN KASS: Rebecca.
PROF. DRESSER: First I want to say, unsurprisingly, how
beautifully written this article is and I personally enjoyed very
much hearing that speech as well as reading your response finally,
sort of how you see our work, and it's a relief for you to speak
out and I appreciated that.
In terms of topics, I'll throw out a couple that we
have talked about previously. I'm not necessarily advocating on
their behalf but just to get some topics out. I think yesterday and
previously we have discussed trying to do something on the health care
system. What exactly that would be, how we could provide any wisdom
given our composition without health policy people and so forth, is —
those are questions but that's one possible topic.
The other we discussed in the past was commodification of the human
body and the role of the private sector. I think yesterday we heard
a lot about how the private sector is influencing the treatment
and the options for long-term care of older people. You have many
lobbyists promoting the cutting edge therapies and the drugs and
so forth. And those are the things that tend to get reimbursed
and supported. You don't have the lobbyists supporting plain
old personal human contact and social works kinds of things and
so those are not as available in the system.
So the role of the private sector is underlying most of the
topics we've considered and so maybe it would be interesting to do
a topic like commodification of the human body that would bring it in a
little bit more directly.
CHAIRMAN KASS: Thank you. And let me use Rebecca's
turn to possible topics to say that both questions are on the table
and we shouldn't let this session go by without really offering
eager thoughts and collectively trying to formulate some suggestions
of things that might go forward. Paul and then Mary Ann.
DR. McHUGH: Well, I wanted to follow up with what Rebecca
said but I also want to follow up on what Mary Ann also said and
was very persuasive about yesterday. I think there are two things
that I would like to see the Council move towards in relationship
to discussing matters of American life and ultimately following
the Krauthammer rule in telling people maybe what they ought to
do. We've spent time talking about the aged. Now I think is
the time to talk about children and the family.
It is at last becoming clear that the forms of families
that have been developed, especially divorce and the like, are very
harmful to children's psychological development and the casual way
that we approach that on regulatory and various other ways has been a
scandal to our country as is now clear to all psychiatrists who care
for the products of those families. But there are many other things
about the child's position and its vulnerability towards — not
simply towards its life, although that's at stake too, but very
much in relationship to its flowering and flourishing as a human being
and what constitutes the kind of structure that if it can't be
provided by the family, we should be talking about how it could be
provided and what kinds of things come natural to a family and what
kinds of things, therefore, have to be structured elsewhere.
In this sense, I'm reminded again, as a psychiatrist, is what
happened when we did the deinstitutionalization of the mentally
ill. For awhile, we simply turned them from the back wards into
the back alley of our cities until coherent community psychiatry
people like the leader at Hopkins, William Breakey, began to talk
about how we needed to reconstruct in the community the kinds of
resources that were easily available in the institutions —
the occupational therapy, the vocational therapy, the various kinds
of services that were previously available and did great good for
those people in the message of a less confined life for them. So
that's one issue that I think is right before us and might well,
as I say, for the child development policies that even the discussion
of them and even the considerations of the data that are now available
would be extremely helpful to developing policies.
The next thing related to the new director is a point that
we've made several times before, that this is a Council on
bioethics and maybe the time has come at some point to talk about
whether the bioethics move has met its promise. Some — the claim was
that with the new technologies and the new availabilities, that we
really needed people who had fought seriously about these matters in
order to help us doctors to deal with the issues in the front. Well,
that continues to be a — what we're seeing a lot, yesterday, and
empirical question at least and very much a question that I struggle
with and I hope our Council would.
Our coming Chairman has done wonderful work in my opinion in discussing
these matters and challenging what sometimes becomes the lingo of
bioethics, these autonomy words, beneficence words and talk to us
more coherently about the sort of virtues that spring up from a
flowering opportunity to care for people and the appeal that people
have to you when they come asking you for your expertise. So at
some point, I would like to hear the various champions of bioethics
come and tell me and us and therefore, the American people, that
they've advanced us from what were the ethical principles that
were taught to me in the '50s before bioethics was even heard of.
CHAIRMAN KASS: Mary Ann.
PROF. GLENDON: Well, Dan, I don't know exactly where the deltoid
is, but I'm sure wherever mine is, it needs some exercise.
I do want to amplify a little bit the theme that Robby sounded about
the diversity of this Council. Robby mentioned the diversity of
viewpoint but there are other kinds of diversity that have posed
a real challenge for us and I think one of the great achievements
of this Council has been to overcome them.
How difficult it has been for people to communicate across disciplinary
boundaries. That's something, I think, one tends to take for
granted that you can put a group of scientists and humanists around
a table and since we're all English speakers, we will be able
to get on with the business. I would say it took us even a year
or two to move across the boundaries, some of us with great enthusiasm.
I felt about the four years on this Council it's like going
to graduate school again. It's been wonderful. It's been
a great education. And there's another kind of diversity that
is equally challenging and that's the one that comes out in
the exchange between Gil and Frank. Some of us are more practice-oriented.
We're looking for concrete recommendations for conclusions,
solutions and some of us say, "Oh, oh, be careful. You don't
want to rush to the recommendations and conclusions unless you're
sure you have really understood these very complex problems".
And I think the way we have dealt with that — and our
current report on aging is a beautiful example of how we have kept
that tension alive, that theory and practice are, indeed, the two
blades of the scissors and you cannot make a pleasing construction
without using both of them. And it's always going to be a tension,
but it's one that I would hope the Council will keep alive, that we
can't really go off in one direction or another.
And finally, Paul has said it already, better than I could
but I would urge the Council in the future to try to adopt a capacious
understanding of bioethics along the lines that Rebecca has often
recommended and in the case of attention to the problems of demographic
change in our society, keeping in mind that children as well as the
elderly, are at risk of being marginalized and that questions about
priorities and research and allocation of resources in our country are
questions that have a strong ethical dimension.
CHAIRMAN KASS: Peter.
PROF. LAWLER: Let me just comment on some of the ideas put
forward. First, I want to agree with Alfonso and Gil that we
professors of abstract subjects really can't think in terms of
accomplishments very well. By coincidence, one of our new faculty
members asked me, you know, a relatively old professor, "How do
you know you have accomplished anything"? And then my dean asked
me, "How can you assess what you've accomplished"? And
these things make me feel guilty for the rest of the day but then
occasionally, there will be a moment like Gil had where you know, well,
maybe I have accomplished something. In terms of taking on the
profession of bioethics, in my opinion, all our reports take on the
profession of bioethics.
The question would be, should we continue our indirect assault
or go to a direct assault? A direct assault might result in many
casualties and I've been very relieved in attending these sessions
of this Council that we've never had a card-carrying professor
of bioethics testify. And —
CHAIRMAN KASS: That's really not true. It's
repeated but it's just not true and allow me to correct that.
PROF. LAWLER: Okay, well, it depends what you mean by card-carrying.
I don't think Mr. Caplan has testified. But I'm saying
the autonomy model of bioethics is taken on so forcefully and beautifully
in the report that just came out that I don't need — I
don't think we need to name names and go after people in particular.
We'll just continue what we're doing, thematically without
showing that the dominant academic approach to this is rather bankrupt.
We can show that by example without saying that straight out. I
could be wrong on this.
PAUL MCHUGH: Psychiatrists mainly.
PROF. LAWLER: And many other members disagree with me on
that, but the — and I think we're on the cutting edge of this and
they are the ones who are washed up actually is my true opinion. An
issue that —
CHAIRMAN KASS: You're now going to come to the
provocative comments.
PROF. LAWLER: No, I could say more, but I mean, we need to
be constructive now. The two issues that were brought up yesterday
that caused me to despair part of the evening. One was reform of the
health care system. Our report says that should be directed to the new
Commission and I think with good reason. We don't have the
technological expertise and yesterday we heard that these days, which
seem like critical days, will be the good old days in the future.
Everyone is dissatisfied with the present system. No one knows what to
do. Maybe this is not our task. Maybe this requires more technical
expertise than we have.
In terms of the demographic changes, the importance of
those is presupposed in the existing report, the report that's
going to come out at the end of the month, but certainly more study
there and what's the world going to be like with many fewer
children, I would be in favor of that. But the issue yesterday that
was brought up as a platitude many times is we have to value caregiving more as kind of a content imperative. We have to value
caregiving more but no one explained how we would actually do that
because caregiving, like everything else, has been commodified.
It's a sustenance kind of thing. How do we value caregiving
more? So I would actually like to see us study that as a separate
issue. You can't just say you have to give these people more
value, you have to have some plan for giving people more value in
an individualistic autonomous world where people who just care are
devalued more and more. And so in general, the general issue of
commodification seems to me to be huge. And so maybe we ought to
focus on one particular area where commodification is a problem.
And I might think that area might be the valuing of caregiving.
CHAIRMAN KASS: Thank you. Diana.
PROF. SCHAUB: Yeah, I just wanted to make a quick response
to that anti-accomplishment crowd. That was a beautiful phrase, Gil,
about living by faith and not by sight, and I'm —
PROF. MEILAENDER: It wasn't original.
PROF. SCHAUB: No, no. You brought it forward in a lovely
way. And I'm certainly in agreement we don't want to, you
know, send out surveys to see how we're doing and we don't want
to come up with assessment mechanisms or anything like that. We want
to do what we do and give ourselves up to our inquiries in some sense
for their own sake. We're all, you know, scholars, and we trust
that there will be those who will read and be effected by our
scholarship.
So I have great sympathy with that, but I would just point
out, Gil, that you're — and Peter also, that you are teachers as
well as scholars and the reason that your student read you writings was
because you were her teacher first. And so my opening suggestion was
really that the Council think of itself as having a teaching mission as
well as a scholarly mission and to give some thought to what that would
mean to have a teaching mission.
And let me just add that my notion of teaching is not
lecturing the public or being dogmatic in some way, but engaging the
public in the same conversations that we've been having or certain
portions of the public that we think need to — you know, would benefit
from these conversations and to think about ways to find the ways to do
that. And this would be regardless of, you know, what topic we take up
in the future.
PROF. LAWLER: Alfonso.
DR. GÓMEZ-LOBO: On the topic of future themes that
we may study, I happen to — after thinking about it a little
bit, I think I side with Peter in the sense that I'm not sure
it would be wise to have bioethics, per se, as a topic of discussion
of the Council. The reason is this; I'm very skeptical about
the field of bioethics, per se. I think that the real battles are
fought not at the bioethics level but at the ethics level and the
deep disagreements on philosophical outlook that undergird particular
bioethics positions, those are very hard to reconcile, and it would
get us into an endless seminar of philosophy here. And I'm
not sure it would be wise to do that.
I think that we should do our little portion of ethics/bioethics
and put forward our arguments and, of course, if there are antagonistic
positions in the public, they are going to be discussed. On the
other hand, I happen to think that the topic of children is exceedingly
important. I agree with Mary Ann and those who have spoken about
that, because there is tendency to instrumentalization in present
day culture. I mean, technology drives us to see most things as
instruments and sometimes I get a sense that even children are viewed
as instruments, instruments for one's happiness, instruments for
one's prosperity or on the other hand, as obstacles, as instruments
that do not yield their fruits.
And that's why I think it is a very important and deep bioethical
or ethical question and I sort of suspect that if we start studying
it, we're going in for certain surprises. If we — you
know, if we bring in people who have thought about the field, who
have had the experience, and deliberating about that seems to me
a very important task.
CHAIRMAN KASS: Gil.
PROF. MEILAENDER: I didn't mean to launch us on a discussion
of teaching philosophy. That was not my intention, though I'd
be happy, Diana, sometime to take those questions up with you.
I hate to see you siding with those who want assessment plans or
anything.
(Laughter)
PROF. MEILAENDER: But I wouldn't want to see us take
up bioethics as a topic, not because I don't think there's a
lot of important stuff there. I don't carry any animus against the
field and I don't think we do as a body because I think it would
focus us really solely on certain kinds of questions of method and
that, to me, doesn't seem to be what we're most suited to do or
even could do best. There are two places, one of them — I'm just
going to second what's already been mentioned.
One hasn't been mentioned that I think that we could —
that are important and that we could profitably do work. One of
them I've mentioned before and we've always shied away from
it and we probably shied away from it for very sound reasons, and
it would — if we think we've found ourselves in impenetrable
thickets on previous occasions it might be even worse, but the whole
range of issues surrounding organ donation and transplantation are
really very much on the table these days and are very hard to sort
through, that kind of working definition, the criterion of when
you know someone's dead is under pressure from several different
directions. If you're interested in the commodification issue,
the sale of organs or various sort of forms of transaction that
perhaps fall a little short of sale, are also there.
So — and even questions just about whether it's always
worth it, whether a certain kind of desperation enters in. Those
would all be important questions to ask, though we might find ourselves
with more people angry at us than we've already created around
the country. So — but I do think it's an important issue.
The other one, I think that the children business is important.
I just wanted to add a couple things to the way it's been mentioned.
I mean, in a way it would be nice, if we looked at end-of-life aging,
if we looked at children that would be nice. I think there would
be a whole range of questions that haven't been mentioned.
I mean, just to think about how one ought to think about children.
We sometimes may think of them simply as kind of miniature adults
and that's not necessarily the right way to think about them.
In the bioethics literature, they're often just another vulnerable
population, along with various — you know, whether that captures
everything that one ought to say about them. The use of children
in research is still and will continue to be an important question
but not just in scientific research, use of children in advertising.
I mean, there are all sorts of questions one might raise. Whether
we have special responsibilities to children with disabilities.
So there'd be a range of questions one could take up.
Now, you know, whether they'd all fit together into
some single project, I'm not sure I could say right now, but
it's a very rich topic with a lot of different angles that could
certainly profitably be pursued.
CHAIRMAN KASS: Dan Foster.
DR. FOSTER: I just want to say a brief word in agreement
with Frank's initial comments. You may remember that in the
cloning report that the minority group on which I sat, was in favor —
voted, was in favor or research cloning and — but it was coupled with
the provision that proper regulation be attached. That was part of the
official position that we took under those circumstances, recognizing
that there would be certain biological and other dangers associated
with these techniques that were worrisome and they should not be
carried out freelance. And so, as a consequence, it's almost
necessary for the views of these new techniques that there be some sort
of regulation. We made an attempt to — you know, we'd say,
"Well, Congress or whoever shouldn't allow you to make, you
know, a human embryo with a goat", or something like that. You
know, there were broad regulations and one thing that we might at least
say right now, the probability is that the regulation of these events
is going to be vested in the FDA and that may be a wise decision or it
may be an unwise decision and it wouldn't be inappropriate, I
think, for this group to at least give an accent to what type of
regulation might be used, what sort of body might be used even if not
giving all the details about how this would go.
I think that this — the reason that I think this is
increasingly important is that things are speeding rapidly in terms of
stem cell research. We came up with a White Paper about ways to avoid
the embryo question. I think that's going to happen real fast.
The embryo question is going to disappear and not by the techniques
that we talked about, maybe with a variant of Type 4.
As it turns out, Dick was at the London conference and I have not
yet seen the patent, but if it is possible to, in fact, make what
has been called the stem-bred, which is a remarkable technique,
the details because if there's a patent there or not, but what
Yuri Verlinsky in Chicago did was to take a stem cell line, I think
I mentioned this before, it's probably one he made himself rather
than an NIH stem cell line, and merged it, it was basically a cloning
experience, with a somatic cell. And what he was — and it
was a — it was a female cell line and the cell line that he
developed was an XY because it was taken from a man.
And so he established — he's established 10 cell lines,
at least he's reported, from diseased humans, which is what
we want, that's why you want research — the problem with
the lines we have, they're all from healthy, in vitro fertilization
things. They're not useful in terms of trying to deal with
disease. If that's the case, if that turns out to be the case,
that you can completely avoid the embryo question just by using
stem cell lines that are already there as the recipient and establish
an immortalized line from Parkinsonism and so forth, then we've
immediately got to consider the possibility of injecting these things
into humans and things of that sort.
Now, the other — the hybrid model that was just put out,
you know, which, you know, you made a heterokaryon, in other words,
it was a merging of a somatic cell and a stem cell, and you got
a dual nucleus cell to start off with and it differentiated the
somatic cell, so it was like a stem cell — the problem with
that is you've got to get rid of half of the chromosomes and
so forth, and that's going to take a lot longer, but my point
I'm trying to make is, that I think the embryo question —
I might be wrong, but I think the embryo question is going to disappear
because we're going to be able to make these stem cells without
having — every having an embryo. I mean, that was what Bill
Hurlbut wanted to do in his model, but once that happens, we've
got to have some sort of regulation.
You know, in the initial DNA things, you know, we've talked
about this before, the scientists thought that the RAC committee
— we had to decide who was going to get to do and what was
going to be approved, you know, the common thing. So my sort of
long comment here is that I believe it would be very important to
do what Frank has said, maybe in a broad sense to say, well, there
are several models by which one could do this: a scientific model,
a regulatory model of the Canadian or UK type, I'm not —
I don't care about that, or some modification of the FDA, but
somebody is going to have to say what we're going to do.
We're not going to do anything with these lines that we have
— that NIH has. They're worthless because they're
drone. I mean, use them for science, but not for therapy because
they're all grown on mice cells, you know. You got all these
viruses and things. Now, the Koreans, Hwang has now made cell
lines. He's got 11 that were not grown on animal tissues and
so that's also going to push things. So I think the need for
regulation is pretty — is much closer than what we say and
the question is well, should we comment on it or just leave it to
the other people? You could argue either way.
I would prefer for us at least at some point in the next term,
to have a suggestion about how this near imminent possibility of
using stem cells and so forth in therapy is going to be controlled.
So I want to speak in terms of at least having us think about that.
I just want to make one other — two other real quick passing responses
about whether anybody is going to read what has come out of these
volumes. Very few people will do that, that's true. I mean,
in medicine or science, I mean, there's a huge amount of information
and you always long for the people who are practicing to have read
the most important new things and oftentimes they don't have
time and they don't do that. And I think that we could —
I think that we could say that these reports — and I'm
not — let me back off.
At the Lasker Award, Joseph Goldstein, who was the Chairman
this last Lasker Award, he had a very interesting analogy and there was
a — I don't think I've ever mentioned this, there was an —
there was a monument on top of one of the museums which was made out of
stones — did I ever — well, the bottom stone weighed two and a half
tons and the top one — so it was a pyramid. And up at the top was a
two-pound stone. Now, Goldstein's point was that there were
550,000 papers published in the medical literature last year, 550,000
in the 4,000 journals at the National Library of Medicine archives,
okay?
And his point was that the mass of information that came
out of there was worthless. That there were only — there was a 2.5
pound set of papers that was importantly new and not trivially new and
I think that you just can't worry about that. I think that in one
sense that we probably were in — I mean, what has happened here was
really importantly new material that was covered and not everybody is
going to read it but that's okay. I mean, it will still have some
influence I think.
And I'm not so worried about — I don't think you
can go on television — look 47 percent of Americans believe that all
the species that exist today, existed exactly like they are today from
the beginning of time. Okay, 47 percent of Americans believe that, so
robins haven't changed at all. They've always been exactly —
you're not going to be able to deal with that in terms of what
we're doing.
The last thing I want to say is that the incentives about a lot
of things like health care are so — it's going to be hard
to overcome for the commodifications of — I would myself love
to talk about transplantation again. I said that before, but I
heard the head of Humana speaking to the Chairs of Medicine one
time and he said, and he had an impassioned speech by Tom Andreoli,
who was then the Chairman of the University of Medicine Arkansas
and he berated him as the head of a big company — You could
say the same thing for a big pharma, about their lack of interest
in terms of human things and medicine and so forth.
And the CEO said, "You know, it may well be that I would like to
give a million dollars from Humana to support the Chairs of Medicine",
or whatever he said, "but money is fungible and my first responsibility
is to the stockholders. I can be a cancer like Enron but my job
and for all the stockholders is to make money for them and I might
personally think that it was good for me to cut the prices of all
the drugs such that you could do that, but then money will flee
from Humana or from big pharma to another company and we're
out of business. So the incentives to do what we would like to
do are very heavy in the very heart of what the capitalistic system
is about. So we shouldn't be — we shouldn't be sanguine
about the fact that we can change that to make the health care system
more — that has to come from the Government or something of
that sort.
So those are just casual comments, but the main thing is I
hope that whoever is on this Council before would look into the issue
of at least a broad overview of regulization. I truly think we're
going to need that.
CHAIRMAN KASS: Thank you. By the way, let me suggest that
we not have — despite the — I didn't mean it as an invitation.
No one should take this as an invitation to have an argument about stem
cell research, if that's all right.
DR. FOSTER: No, I don't think you understood me. I
said I think the arguments about stem cell research are going to be
over because I don't think we're going to have embryo arguments
and I know I've talked too long —
CHAIRMAN KASS: But lest someone rise to correct you on
that — I see the hands of some people who might want to do that, and I
wanted to tell them, don't.
PROF. GEORGE: I promise I won't.
CHAIRMAN KASS: Robby, take the floor. Turn your mike on.
PROF. GEORGE: This is not an argument about stem cell research.
I do want to comment on the first half of Dan's remarks but
only again by saying that I agree with a very, very large measure
of what Dan has said, including the call for us, and I think we
are the body to do it, to think about regulatory — at least
the procedural issues, the regulatory structures that really should
be in place in view of what we know is coming. Now, without arguing
with Dan about the embryonic stem cell issue, I do want to register
this; that of course I share Dan's enthusiasm for what Yuri
Verlinsky has evidently accomplished, what Kevin Eggan has done
at Harvard, Trounsen is doing similar things evidently in Australia
and as you know, I've been an enthusiast and a cheerleader for
Bill Hurlbut all the way along because I think his proposal is so
important and my hope, like yours, Dan, is that we will be able
to lay aside the embryo question because we've found a way around
it, a way to obtain pluripotent stem cells without embryo destruction.
But I want to say why I fear the issue won't go away and just
very briefly, it's this. I think that the next issue on the
embryo front is not going to be blastocyst stage stem cells, but
rather the gestation in either an artificial environment or the
female volunteer of the embryos for some degree of development after
which they would be destroyed and harvested. I think this issue
is coming at us. I've got an article coming out about this
in the Weekly Standard in the next issue but more important
and better than my article and I would commend to everybody on the
Council to read it, or read them, these are very much worth reading.
Will Saletan has a series, a multi-part series in Slate Magazine
online about this question. So as much as we would all like to
put the embryo question behind us and as hopeful as we are that
Verlinsky and Eggan and the others, Bill Hurlbut will help us to
get over the debate about blastocyst-stage stem cells, I just fear,
Dan, that it's going to be with us.
That doesn't detract in any way from the conclusion that you
rightly draw about the need for regulation one way or another, but
I just want to register ahat I know is a very uncomfortable point
because I, as much as all the rest of the members of the Council,
including our distinguished Chairman, would like not to have to
argue about this all the time.
CHAIRMAN KASS: Ben has been waiting.
PROF. CARSON: Actually, a completely different topic.
CHAIRMAN KASS: Good.
PROF. CARSON: You know, I alluded yesterday to the concept
of wellness and I want to just elaborate a little bit on that because,
you know, when we're looking at many of these bioethical issues,
we're looking at technological advances and how they can be
applied, you know, perhaps to eliminating cancer or how we can get
to a medication that might get rid of some of the amyloid bodies
and perhaps deal with Alzheimer's, but I would hope that at some
point we could concentrate on root causes of things because I think,
for instance, the environment is a huge bioethical issue. When
we look at the way our environment is being constantly polluted
by petroleum products and things.
And you look at the amount of money, for instance, that has
been spent over the last couple of decades by the NCI to get control of
cancer and yet, the rates of cancer are actually increasing. Why is
that? And I personally believe that there are some major
environmental issues and I know there are many others who believe that
as well. I wonder if we could have some of the experts in those areas
come and talk to us and begin to maybe formulate some policies about
that, because if we can put some science behind it, we might be able to
get some real public policy done there.
If you look at things like the dramatic increase in the
number of children diagnosed with attention deficit disorder, you know,
why is that? You know, there have been, you know, a number of
proposals, one of which is that it seems to be much more prevalent in
this country than in countries where they don't vaccinate
children. Shouldn't we be looking into some of these issues in
terms of some of the things that are placed in these vaccinations? I
think that that's a very good charge for a bioethics council.
CHAIRMAN KASS: Thank you very much. Bill and then Frank.
DR. HURLBUT: I don't want to reintroduce the embryo
question.
CHAIRMAN KASS: I won't let you.
DR. HURLBUT: But I do want to say this, that in the
deliberations that were just referred to, we tried to shift the
question off the difficult dilemma of when in the progress of
development, the developing human embryo has more value to the question
of what, and I think there's no way for us to escape this crucial
question of what is the minimal construction that is worthy of human
dignity and therefore, protection.
I — for one thing, I agree with Dan about the issue of the
embryo but in a strangely different way. It's not clear —
it's becoming increasingly clear that it's not clear what an
embryonic stem cell is, what stage of development they would optimally
be taken from. Now it's turned out that via mice there is
successful harvesting of embryonic stem cells from the eight-cell
stage. Each stage may have a different property. I don't think
this is just going to be solved by creating stem-breds.
I think we've sequenced the human genome, are understanding the proteins
it produces and now we are entering the age of developmental biology.
From here on out, it's about living organisms and the human
living organism. This means that we can't run away from the
issue because as the body charged to deal with the ethical issues
of our age, this is the ethical issue of our age.
Now, we don't have to have endless arguments about when
an embryo develops moral standing because we have trouble resolving
that, but we are going to have to face the issue of at least what is
the minimal construction that constitutes a moral entity. Even
reprogramming poses that problem to us. When I put forward altered
nuclear transfer, some professors from Harvard made the comment that
you can't define human life on the basis of the absence of one
molecule. Well, I don't agree with them for one thing because that
may be the optimal way to do reprogramming, to bring the cell back down
to within one molecular type of its human constitution, but the point
— the larger point is, we are going to with stem cells, create human
parts, apart from the whole of the body. We're going to have to
start defining what is the minimal construction.
Is a brain with one sensory modality worthy of protection? I mean, that's
a science fiction scenario, but we need to start understanding.
If we're going to grow human parts apart from their place in
the living whole, we need to come to terms with the commodification
questions that are involved in growing whole organs, maybe even
organ systems in factories or such settings. We need to face the
question that Robby posed, that embryogenesis requires complex micro-environments
for its — for the successful differentiation of cells, tissues
and organs and the question of whether there are possibilities for
growing systems that are actually evolving in terms of development
that are still ethical because they don't constitute organismal
wholes.
I just don't see how we can avoid this. We have to face the
questions of human-animal chimerizations, the complex questions
that may be summed up with the term the boundaries of humanity.
So I would urge us not to flee from that which is running toward
us. There's a saying in Russia, "When the dog runs at
you, whistle." I think this — just to carry this one
step further, I think it means that we need to develop effective
tools for collaboration with the scientific community in order to
help foster and encourage and even help the public come to accept
some of the less easily intuitive positive possibilities of scientific
advance and so I'd like to see a way to work in really positive
ways with the scientific community and also agree that that will
mean that we have to find ways to cooperate in the establishment
of some regulations.
And just to add a couple more points of further projects that hinge
off of this, I've been doing quite a bit of international travel
in the last couple of years and specifically, I was in Asia this
summer. And I think we have to face into the very profound significance
of the global community on these ethical issues. Part of our mandate
originally was to — I can't remember the exact quote but,
"Develop cooperative collaborations on an international level",
and I don't think we've effectively done that, although
we've had some testimony from other countries. I'm frankly,
worried about the significance of a world where arguments are made,
"We have to do it here because they're doing it there."
That seems to me not a good argument, but more importantly, there's
the omnipresent danger of the — what you might call the outsourcing
of unethical practices, if we can't do it here, we'll get
it done over there.
Now, obviously, we can't even figure out a way to
regulate our own country, we're not going to regulate the world,
but I think we need to start working in some measure of initial
thoughtfulness as to how we can establish cooperative international
collaborations. And I think, just to hinge on what Ben said, we are
increasingly coming to understand, those of us with scientific
training, how subtle and fragile biological systems actually are and
how little tiny things like any one of the 80,000 industrial chemicals
in our environment, artificial chemicals, might be altering something
of crucial human significance.
I'm not saying it's associated with vaccinations or
with the — you know, the artificial chemical in your couch or
something but some — for some reason there's an increase in
autism. We have to face these questions. There's this weird issue
of phthalates. What are they doing to the next generation's
fertility? And that would be a good public education thing.
CHAIRMAN KASS: Do you want to conclude?
DR. HURLBUT: What?
CHAIRMAN KASS: Do you want to conclude?
CHAIRMAN KASS: Pardon me?
CHAIRMAN KASS: Would you —
DR. HURLBUT: Wrap it up.
CHAIRMAN KASS: — move to the end.
DR. HURLBUT: Yeah. The other thing is I really think we
need to face into the — on an international level, the fundamental
danger of biotechnology tapping into our most primary desires because I
think what's happening to us as a society is we're using
biotechnology to short-circuit that which we've always wanted to
have in terms of media pleasures, sense of personal ideals of
appearance and performance and so forth.
That creates a very significant situation with the danger
of desire magnifying our powers to get what we want, putting a
preoccupation in our minds of what naturally is a positive desire but
unrestrained with biotechnology becomes a preoccupation or vanity and
even a selfishness and with 30,000 kids dying on average every day in
the world, it seems to me that we could use biotechnology to become —
enhance our own vanity rather than increasing our goodness in the
world.
And in that sense, I think we could end up being a society of addicts
to short-term goals instead of the comprehensive good. And finally,
I'd like to say that I would hope in the next session we might
consider the possibility of maybe having a Volume 2 of our anthology
of literature because we really need to extend the positive resources
and the affirmation that these bioethical issues are profound issues
around which there's been a great deal of thought in human experience
and wisdom traditions.
CHAIRMAN KASS: We are roughly at the end of this session.
Let me — I want to introduce a comment that I received from
our colleague, Mike Gazzaniga, who couldn't make this meeting
on the issue of new topics. "I continue to believe that a
full examination of health practices in America would be a great
topic, the short version," and Mike likes the short version
although he's introduced this to us before. "Have Americans
been oversold on the need to see a doctor? Health benefits are
bankrupting the country and institutions. I see this as a problem
both from a practical and ethical perspective". And this ties
into the presentation that we had from John Wennberg at a previous
meeting on what are all these costly interventions actually getting
us.
Since I haven't said anything, indulge me three suggestions
of things that I think might be put on the table, and if you don't
mind, maybe I will try — once I've read the transcript,
try to distill some of the positive suggestions of topics into a
kind of memorandum to be circulated to all of you for amendment
and addition and make this my gift to the new Chairman for his consideration
for our collective consideration. So I'll try to distill some
of this and you'll all have a chance to add and develop it.
But I think I would like to underscore the children's topic.
It was — we touched on it most especially in "Beyond
Therapy" on the uses of psychotropic drugs as well as questions
of choosing sex of children, questions both of a practical and theoretical
sort. How to get a handle on this, whether one should really talk
about the medication of children or the kinds of things that will
give rise to the increased incidences of these disorders in children,
God knows why. I think that would be a terribly important subject
dealing with children not only because they're vulnerable and
don't have advocates, but because they really are our future
and we owe it to ourselves to bring our best thinking and ethical
reflection to bear on this.
Second, this is only sort of tacitly mentioned really in Rebecca's
comment but it was very prominent in yesterday's first discussion,
I believe, where we were talking really about sort of the ethical
dimensions of the access question, not the political arguments,
not the economic arguments and not to put it — Peter observed
yesterday that this Council doesn't generally speak a lot in
terms of rights. We tend to speak in terms of good. And then the
question is what does a decent and a good community in fact owe
to those of its members who are unable, in fact, to provide for
themselves in a way in which they would like if only they could?
And I think the aging topic is only one piece of it. And one has to
find some kind of manageable way to do this, but to do this in a
serious way, not simply to become an advocacy group for a particular
point of view, but try to really sort out how to think about this
in a constructive way. That would be, I think, an important contribution.
This is the case that all third things today I'm not going
to remember. One was the children, one was this — oh, yes,
the third thing has to do with what we'll talk about after the
break. Government regulation is one thing that we have considered,
but regulatio, as the report we issued makes perfectly clear, if
you understand regulation broadly to include things like tort laws,
professional standards, et cetera, so many of the things we talk
about enter into the lives of ourselves and our fellow citizens
really through the good offices of the medical profession. And
some reflection on the character of the profession, the medical
calling and its own professional self-regulation, a topic, I know,
very dear to Ed Pellegrino's heart, but one which we've
touched on tangentially but have never really taken up, especially
in its new context, an age no longer of lore, not to speak of Hippocrates,
but where you've got all of these commercial interests and the
changing practice, do we have something useful to say about how
to shore up, to articulate the medical vocation today in its current
circumstances and to offer something useful on that subject I think
might be another large thing that cuts across the small topics but
one on which under the new leadership, I think we would be very
well poised to say something.
Unless somebody has an epiphany or — it needn't be an epiphany.
Frank, you had your hand up before. Please, take the last comment
and then we'll break.
PROF. FUKUYAMA: Well, this is a suggestion for a new topic.
I think there ought to be some investigation of non-Western ethical
systems and what they imply for the future of biomedicine. There
was a KBS team in here that interviewed, I think, Rebecca and me
from Korea and they had this question, "Well, what do you think
of Dr. Hwang and don't you think that your high ethical standards
are holding you back, you Americans, while we Koreans race forward"?
It is — and I think that we ought to — it ought to
be looked at not as, you know, let's see Asia as a zone of unethical
practice but really from internal to those ethical systems, what
implications does it have for the way biomedicine is going to develop
in those countries? One thing — I mean, I can give a seminar
on ethics in Asia, but one thing for example is extremely clear,
the bright line that the Judeo-Christian tradition draws between
human and non-human that invests human beings with dignity simply
is not supported by any of the ethical systems in Asia.
Buddism, you know, Taoism and Shinto are polytheistic
religions, you know, so that everything is invested with spirituality
in a certain sense. Hinduism and Buddhism, you know, both have
doctrines of reincarnation where you can come back as an animal and it
has interesting effects because it gives — in those ethical systems
non-human creation has a higher moral status and so it's quite
interesting. The Japanese primatologists were the first to notice that
actually certain classes of macaques actually had culture that could be
transmitted. They're more open to this idea that non-human
creatures have, you know, a higher degree of dignity but this idea
that, you know, there's this moral status that switches on simply
because you're born a human being is really not supported by any of
those systems.
And I think you need to — and democracy in Asia is not
going to solve this question, you know. This is a problem in
democratic Japan, democratic South Korea. There's simply
different, you know, ways of looking at the world, and since so much of
the science is going to come out of that part of the world, I think
that we owe it to ourselves to educate ourselves a little bit about
what some of these alternative, you know, ways of looking at these
issues are.
CHAIRMAN KASS: Thank you very much. Seventeen Council
members and 18 opinions. We'll try to sort out some of these
comments and give you a memo before you take the Chair.
We're adjourned. I don't want to steal too much time from
the discussion of the story, so please return promptly in 15 minutes.
I know some colleagues have to leave early.
(A brief recess was taken at 10:12 a.m.)
(On the record at 10:32 a.m.)
SESSION 6: THE MEDICAL VOCATION,
THEN AND NOW
CHAIRMAN KASS: Why don't we get started? a lot of the
work that this Council has done has been informed less by the brand of
bioethics that takes off from sort of medical ethics where questions of
informed consent and things of that sort loom large but we have — and
part of what's distinguished what we've done is that we've
also been taking up questions that are — if you speak in terms of
academic disciplines, belong more to the philosophy of technology and
to think about technologies, human meaning and its social
implications.
But as I hinted before the break, several strands of our
work really impinge upon the doctor/patient relationship and on the
ethical character of the medical vocation. a growing number of aspects
of life have come under the medical umbrella through the expansion of
psychiatric diagnosis, enhancement technologies and the treatment of
various aspects of behavior, now with the advent of neuro-imaging
techniques to bring these further within the orbit of medicine. And we
have, from time to time, talked about medicalization but not about
medicine.
We, in the regulatory discussions, have looked to the importance
of professional self-regulation; however, loose in governing what
takes place when health care is given and when the technological
innovations reach the public. And for many of these matters, a
medical license and the ability to understand and use medical innovations
is an indispensable union card for actually making biotechnology
common to human use.
And finally, as yesterday's discussion made clear,
there is a limit to what medicine can do. Old age, dementia and dying
most emphatically expose those limits. Every doctor's patient
eventually dies no matter how good the doctor is. And the question of
a good death came up in the discussion yesterday and a question can be
raised as to whether the doctor is primarily to be seen as the moderate
day St. George against the eternal dragon or whether he is either a
companion or as the other story by Richard Selzer, that we distributed
indicates, the doctor might even be something of a priest.
I talked with Dr. Selzer last week, asking permission to use the
first story that went in the briefing book and he told me, he's
very touched that we have shown such interest in his work but he
told me that if I really wanted to read something that he thought
was very effective, I should get his latest collection and read
the story, "The Atrium," and I'm not sure I can lead
a discussion of this dry-eyed. This is an astonishing story.
While you're collecting your thoughts, let me just make sure everybody's
got the main point, and then I'll pose a question. While eating
lunch in the hospital atrium, amply described, this retired physician
now turned writer, notices a boy in a wheelchair who is looking
at him. The boy who is 14 years old looks to be 10, all 80 pounds
of him. He's terminally ill with some malignancy.
He's bald, lips encrusted, attached to intravenous drip. He
is all eyes and ears. Selzer, self-identified as the doctor and
writer but also the narrator of the story, observes quote, "He
hasn't the time for shame or restraint, only for honesty."
So the two of them talk. Tony, the moribund boy, quote, "ill
in every way but not ill at ease," assuming a pseudonym, Thomas
Foggarty, presses forward his one concern, quote, "What will
you do on your last day on earth?" The doctor/narrator conveys
his fantasy about dying, envisioning a former student, now a great
surgeon, transporting him to an ancient forest. He gradually becomes
part of the woods. Quote, "The whispering leaves more guessed
at than seen," as well as keenly aware of the mystery of life.
The forest sprawls across his mind. Quote, "The night becomes
a confusion of stars and fireflies, the here becomes there as he
becomes one with the other." His death then is, quote, "a
painless transition, that's all, no more."The next morning
the boy dies, but not before dictating a letter in which he conveys
his gratitude for and understanding of the story told to him earlier
by the narrator. And Tony's nurse delivers this to the old man.
One could say that the narrator ex-physician or question mark,
physician and writer has, at least in the story narrated, somehow
I tried to help prepare this boy for death, though hopes to save
him, as he says, by immortalizing him thanks to his gifts as a writer
in this story, but I'm interested not so much in the immortalization
of the boy but in the deed of Selzer in that conversation. And
I guess the question I would ask is this: Is that a doctorly deed?
Was that a physicianly act, that conversation, or was that —
I mean, was that somehow a deed of an old man himself close to the
end?
PROF. CARSON: I'll break the ice on this one. First of
all, you have to ask yourself, you know, what is a physician?
CHAIRMAN KASS: Exactly.
PROF. CARSON: And you know, I personally see a physician as a
healer. Now, if you're going to be a healer, I think you have
to be able to encompass the entire organism. That includes the
environment in which that organism lives, everything, in order to
bring vitality to that organism. Now, physicians, at the risk of
sounding obnoxious, have more education than anybody in our society.
They take the longest amount of time to be trained and have access
to enormous amounts of information, or at least should.
As such, I think it's improper to confine themselves to
narrow spectra and I'm constantly talking to medical students about
this; how physicians tend to get into their laboratories or their
societies or their operating rooms or their clinics and forget about
the rest of the world. And we can sometimes do that with patients as
well and look at the organ system that is involved and forget about the
entirety of that human being. So I believe Dr. Selzer has done us an
enormous service by showing that there is not only the flesh and the
bones, but it is really the mind and the soul that distinguishes us
from a piece of meat.
CHAIRMAN KASS: Thank you, Diana.
PROF. SCHAUB: Yeah, I think I want to quarrel a little bit.
Yeah, I want to quarrel a little bit because it seems to me that
the doctor himself says he is not behaving as a doctor in that moment.
Now, it may be that he writes with the intention of getting us to
reconfigure and reconceive what a doctor is, but he has the explication.
I mean, this is a very odd structure to this piece. You know, it
looks like a personal essay and then it becomes a kind of short
story and then he attaches an explication. I mean, novelists don't
usually attach explications to their own work and they're usually
ill-advised to do so. But since he's done it, he says he is
no longer a physician, a man of science. He has reverted to a
more primitive form of being, one who is receptive to certain subtle
influences and to intuition.
The doctor in the story knows that he's performing a secret,
sacred initiation upon the boy. He hurls himself into this primitive
rite, recklessly forgetting himself, forgetting himself as a doctor
and as a writer, until that very moment when he hesitates and says
to the boy, "That's all there is. There isn't any
more." And he almost describes that as a kind of failure of
nerve at that point — that he doesn't go all the way with
this new sort of, you know, doctor as shaman or doctor as priest.
So — you know, and he also says that, you know, this is a
story that flies in the face of science. So, I mean, it may be
that doctoring is — I mean, is something different from science
and exists at some kind of intersection of — you know, of
science and mystery, or somehow keeps those two things together
that's separated at some earlier point in history, but I would
be resistant to saying that he simply behaves as a doctor in this
moment.
CHAIRMAN KASS: Peter.
PROF. LAWLER: I sort of agree with Diana. I was very moved
by this, but I don't know why — sort of "there's
a mystery about the mystery" or something. And the strange
explications, which is mighty strange, he says at the top of page
254, he compares the forest to the atrium, the atrium, the architectural
denial of death, and he says in the very first sentence, "It
is what a hospice is in contrast to a hospital, the ultimate refuge,
a triumphant place where the imagination reigns and one is free
of the agony and terror of mortality."
So what frees us from the agony and terror of mortality is a free
reigning imagination. And so that would seem to me that modern
technology enhances and definitely the agony and terror of mortality.
So he says at the end of the next paragraph, "The story 'Atrium'
flies in the face of science," as Diana says, "it tries
to keep the mystery of life from being mowed down by the juggernaut
of technology. So the danger is that modern medical technology
will eliminate the mystery of life, making the agony and terror
of mortality unbearable."
And then in the next paragraph he says, "This is a sentimental
story." So his anti-scientific job seems to be to keep the
imagination alive against a scientific project to eliminate human
mystery. And the big question is, which I can't get from the
story one way or the other, does this mystery have any real foundation,
or is it simply the product of the human imagination which has to
be kept alive even though it's unreal?
CHAIRMAN KASS: Let me bother both of you before things get
further complicated. It's true that the explication, which
is quite unusual, lays some of that rather starkly, but if you took
the story without the explication, you have on page 252 and there's
some very nice explanation of the two meanings of atrium in this
story — the antechamber to the heart and the — and I
think even "heart" is to be understood both literally
and metaphorically there, and the antechamber to this place that
does battle with death, but seems somehow to deny it. But then
he says, he tried to save him not as a human being, but as a character
in the story so that he will not be lost.
That's the comment of Selzer, the story writer. But then the
next paragraph, "I had given him as well one of my dreams to
play with. It was a ruse, a deception, I know. I, who believe
in nothing supernatural, made use of it to prepare this boy for
his death." And here's the line, I think, causes difficulty
for what the two of you have been saying. "It was as if after
years of retirement, I had once again put on scrub suit, mask, and
cap, and take up my scalpel." That suggests that the vocation
of — that he somehow having retired from medicine, was acting
insofar as he was speaking to that boy, in the same way that he
was when he was a surgeon taking something, I think tacitly agreeing
with Ben's view, of what the medical vocation is when in the
operating room with a scalpel.
At certain times with a tail that will ease a person's
exit, when one can do no more than that. What would you say, either
Diana or Peter, I mean, to that?
PROF. LAWLER: I don't disagree with that, but let me
ask the doctors in the room, is it the job of a physician to prepare
— this is not very Socratic in a way, because preparing a
young man for death by telling him a lie, a sentimental lie, kind
of a pantheistic story, and is kind of a paradox, because the boy
before says he's beyond self-pity — he's beyond all
that. He's beyond all the anger and shame and all that, and
all that's left in him is honesty. He wants to honestly face
up to death and so it's sort of a paradox that he is prepared
for death by being told sort of a sentimental pantheistic tale about
death.
And so the big question for me, for which I have no answer is, is there
something real behind the tale or is the tale just a tale?
DR. HURLBUT: He specifically says in the earlier part of
the story, "I see at once that this boy is rare, that I must
not falsely console or cajole." And I think the explication
works against the notion that he is simply spinning a therapeutically
useful ruse.
CHAIRMAN KASS: Diana, please.
PROF. SCHAUB: Yeah. I want to — in a way I think the
boy knows more throughout this story than the doctor does and that
— and there are moments when the doctor recognizes that as
early on when he says, you know, "This boy is passed the need
for stories." But yet he does tell him the story because it
is his own dream. I mean, he actually — he's opening
himself up at this moment. He tells him, you know, "This is
a dream of mine," and the dream he tells him is, as Peter says,
this pantheistic story. You know, it's transcendentalism, it's
Bryant's poem, "Thanatopsies." I mean, it's —
they're very close to that kind of vision, but know what happens
when the boy takes that story. He doesn't just take and accept
that story. He actually gives it back to him in a very different
form, and it is transfigured in that. If you look at the letter
or just think about the writing of the letter, what the doctor tells
him is, you know, "Give yourself up to this vision of a painless
transition and merging together with the cosmos and the unity of
all life," and the boy takes that and what does he do on his
last day, he doesn't just give himself up to that vision. I
mean, we know already he's come down to be in the atrium and
to make human contact. He then goes back up to his room, he's
suffering, he knows this is the last day of his death and he writes
a letter, a letter that costs him tremendous pain.
His transition to death is not painless and it's not painless
precisely because he reaches back out to the doctor, the writer
and the old man. And I mean, we're told it's painful for
him to speak, and yet he dictates this letter. And the letter says,
"It's just as you said it would be," but of course,
"It's not as you said it would be because what I did instead
was write this letter." And then he makes some very interesting
changes in the dream.
The doctor's dream ends in darkness. It ends with the stars
and the fireflies and the twinkling of lights in the darkness, but
the boy's dream ends with dawn, "a moment ago when the
dawn came, it took me by surprise as if it were the first dawn that
ever was, rose yellow." I mean, it's a different dream.
He has transfigured it, I think, because he has brought humanity
back into it. The doctor's dream doesn't have much humanity
in it.
The other thing that I think is very odd and I cannot make sense
of is that he says — he says to the doctor, "Your words
remind me of Edgar Allen Poe's 'The Raven.'" Now that
is a poem, you know, "never more." That is a poem of
loss and despair and hopelessness and the bird that brings that
word is a bird — is a prophet and a bird of evil. And yet,
he compares the doctor's words to that poem. It's very
odd.
PROF. LAWLER: Yeah, this is what I was thinking, only deeper.
But the — obviously, after saying the doctor's lines are
in fact "Poeish," life-denying, right, it's right
before he transforms him, so I have to change it. I have to improve
upon it. And so to make a long story short, it's the doctor
who needs the tale, not the patient.
CHAIRMAN KASS: Rebecca.
PROF. SCHAUB: And the reason that the doctor says, "There's
an illness that I need to recover from," I mean, his opening
literally illusion is to "The Wasteland," right? The
first quote is from"The Wasteland."
CHAIRMAN KASS: Rebecca.
PROF. DRESSER: Continuing with what Peter just said, there
was a boy and the explication there was a boy, but I — as
I was reading through this story, I kept thinking this man is talking
to himself. He's not talking to anyone else. He's dealing
with death. He's presenting this sort of romanticized version
and I was so proud of myself that I was having this insight and
then I get to the very end and he says, "Well, yes, there was
a boy, it's true, it happened", but then he says, "It
takes no great leap of the imagination to conclude that the doctor
and the boy, Tony, are one and the same, that Tony is no more or
no less than the square root of the doctor."
So I found this story very provocative, which, I guess, shows how
good it is, but I was extremely irritated by it. As I was reading
this death story, I thought, this is like Disney's version,
or sort of some organic farmer's version of death, and it just
seemed way too pleasant and Hallmark-cardish and I thought this
guy is talking to himself, but here — this man is a perceptive
surgeon. He's seen the reality, he's seen the blood and
guts. What is going on here?
And I don't know what's going on here. I was — as
I was reading this, I thought about Sherwin Nuland's book, "How
We Die," how brutally honest that book is and he's another
Yale surgeon, right? And I must say, I gravitate more toward his
view of death, so maybe that's one reason this irritated me,
but I'd be really interested in hearing what other people might
think is going on in his mind about preparing for death and in some
ways stepping away from the doctor's role and talking to himself,
but as you say, he talks about becoming the doctor again. So I'm
confused.
CHAIRMAN KASS: Yeah, but why — this is in a way the
— let me add a line to this which I think is probably —
well, it's one of the most poignant lines, this is very early,
where he gives you the reasons why he goes to the atrium and there
are increasing — he starts with the most superficial reasons,
he can't see very well, et cetera. The last thing is to say,
"Perhaps I go there to be in the vicinity of the sick and their
'next of kin.'" Now "next of kin" is a term that's
usually reserved for people who are in grief, right?
So that the images, the sick, i.e., the dying and near dead and
to be imagined as dead and their next of kin. "It is with
the sick that I feel a sense of belonging. The sick are my kind."
Now that raises the question: Is that a doctor speaking? Is that
just an old sick man speaking or is it a person who perhaps by virtue
of having been a doctor, and not only because he's old, somehow
understands more deeply than most of us do that the sick are always
"my kind"? That's puzzling to me.
Can a doctor honestly say "the sick are my kind," or
is that the voice of a certain kind of human being with a certain
exquisite sensibility or something like that who would see that?
And so your attempt to somehow separate the man and the doctor or
the boy and the old man, I think, is very nice to begin with, but
the question is, do the fears of the young made more poignant in
this particular story and especially the fears of the old, are they
not somehow the universal sort of human concerns which doctors,
to be doctors indeed, should not have extirpated from them, but
somehow could be deepened and enriched?
And I've been away from, you know, medicine too long, and I
would really welcome — Ben has already weighed in —
but it seems to me on this particular question "the sick are
my kind," we do battle with their sickness as if we want them
— they are "our kind" especially when they're
made well, but the question is whether that kind of human empathy
is somehow essential to being a physician and never mind whether
the story is true. We can worry about that, but the boy, even how
he's transformed the story, understands the doctor gave him
a gift.
He's made something more of the gift, perhaps, than the doctor
gave him. And the doctor now has to mourn a life that he knew but
briefly and came to love, but the boy recognizes it was a gift and
the doctor describes it as a doctorly act and I don't know whether
it is or not. Gil.
PROF. MEILAENDER: My initial reaction to your question
about "is it a doctorly deed or not" was sort of a simple
one in the sense that — and it may get me into the separation
of the man and the doctor that you're not sure you want to grant.
That one wouldn't have had to be a doctor to do what he did.
It doesn't seem to me that it's in any way essential to
that. Doctors might have more opportunities to do it than some
other people, but a person with a certain kind of understanding
and insight could do that, so there's that sense in which it's
not a doctorly deed or not only a doctorly deed. That much seemed
clear to me.
Now, I took it, though, that what you were interested in though, maybe
actually, I see now that you're interested in more than just
this, but at least I initially took it that you were interested
in thinking about whether we would somehow deform our understanding
of doctoring if we thought that it didn't have to include this.
That one could do doctorly deeds that were entirely, as it were,
that entirely bracketed all of this kind of consideration and still
sort of be satisfactorily acting as a doctor.
And I mean, I do think that the story suggests — for me anyway—
a kind of "no answer" to that question. I'm not actually
crazy about the story he tells the boy, but in terms of the larger
story, I think it does suggest that some — a notion of the
medical profession that thought of it well more as technical and
technique, and not alert to these larger dimensions, would be an
inadequate notion, right where Ben started in a certain way.
But then the third thing I thought about, which does bring me back
to where I started with not wanting to see this in any special sense
as a doctorly deed, though certainly a doctorly deed should also
be included, is that at the end, it's the boy who's prepared
the doctor for his death and, indeed, their initial encounter is
almost initiated by the boy who is looking at him with that glacial
intelligence or whatever the phrase is there. So, "who serves
whom here" is a very complicated question or even "who
doctors whom" is a complicated question, and that again, suggests
to me that while one lesson you might take out of it is that you
can't doctor someone without being alert to all these things.
There's a larger sense in which "to be human" is
a way to doctor other people, not in technical ways but in helping
them to deal with the most fundamental aspects of life, and it doesn't
seem to me that that's confined to the medical profession.
PROF. SCHAUB: Can I ask you a question?
CHAIRMAN KASS: Gil?
PROF. SCHAUB: Leon?
CHAIRMAN KASS: Please.
PROF. SCHAUB: You're putting a lot of weight on the passage
where he says that he becomes a doctor in that moment to prepare
him for death, but the kind of doctoring he speaks of is surgery,
which again, seems to me odd. I mean, he puts — he said,
"The scrub suit, the mask, the cap and had taken up my scalpel."
I mean, he's going to excise something from this boy or perform
an exorcism of some kind. Why surgery and —
CHAIRMAN KASS: What's being cut out?
PROF. SCHAUB: — for the conception — yeah, that's
what I mean, but for the conception of doctoring that you're
speaking of, it would not seem to me that surgery would be the best
model of it. And I think you guys have had some previous discussion
of the Hippocratic Oath. I wasn't here for that, but was I
right in reading a line there where he says, you know, "In
the Hippocratic Oath, you know, I won't take up my knife. I
leave that to those who do that," as if — do that other
thing, as if surgery is something different from [doctoring].
DR. FOSTER: Well, I don't think the surgery has
anything to do with this story. He was a surgeon, you know, and there
are surgeons and are also physicians and some — you know, so I
didn't read into that anything at all about it. I do — I'd
comment in a little different way than I think has come here. In terms
of whether it is a necessity for a physician to have this sort of
sympathy, I would say that the one absolute requirement for a physician
who is ethical is competence. I don't care how big his heart is or
her heart is, if they're incompetent, they're unethical. So
the first and decisive ethical requirement for a physician is to be
competent.
Now, as Osler, we've been talking about him, said, he added
a second [rquirement]. He said that the second requirement was
compassion so that the complete physician should be both competent
and compassionate in a variety of ways as Ben was saying. But if
you had to sacrifice one, you would not sacrifice competent, you
would sacrifice compassion. I know gifted surgeons who are not
very sympathetic at all, but they're who you might want to see
if you had something wrong.
Now, my own reading of this story is that he really is talking
about a sort of — in my view, sort of a universal question
— What does it mean to die? We're bracketed with non-being.
We were non-being before we were born and we're non-being when
we die or might be. People have always had hopes that we do not
cease to be. I mean, it might be a cycling reincarnation as some
sort of an eternity that was going on, or it might be another view
of life after death, but everybody has to deal with this. And very
often, I almost would say most of the time, even if never articulated,
there's an anxiety and a fear, because even if you read near
death visions and so forth, none of us have ever been through that
before.
I've never been close to dying. I mean, I might drop dead while
I'm talking here, but I've not had to deal specifically
with that fear, but I've seen that many, many times at the death
bed, the anxiety and it doesn't — I'll tell you a
simple story. Robby said I'm always telling Texas stories,
but this boy was incredibly gifted. He knows literature, you know,
he cites poems and so forth, incredibly gifted 14-year old.
I'll tell you about another boy. His name was Edgar Lee, African
American. I took care of him. I was the attending physician at
Parkland Hospital. He had a lymphoma. It was a hard time when
we had to send him home and I had to call his mother and she wouldn't
take him at first. And I had to explain to her, it wasn't that
she didn't want him, it was she didn't know how to take
care of him. He lived on Ewing Street in the most impoverished
part of Dallas. I go to a downtown Presbyterian Church and I teach
there, and to my astonishment one day Edgar Lee showed up. He had
walked with his lymphoma. He was not far from death.
He had walked six miles to the First Presbyterian Church
from Ewing Street. He had found out that I was — that that's
where I was on Sunday, and he came up to the class. And then he had an
IQ that could have been no higher than 70. That might be generous to
give him that, but I was his doctor and he heard I went to church and
so he came. And he eventually asked to join the church, which he did
and the — I was teaching high school kids and we would go over to
Ewing Street.
He didn't have sheets on his bed. There were just newspapers
and we took food. And I wanted the middle class kids that I was
teaching to see what this was about. But what he came for was,
he knew he was dying and he was looking for hope. He was looking
for hope and most people have these sorts of fears, and they may
not be articulated at all. Well, you couldn't have a conversation
like this story was with Edgar Lee. I mean, you could love him
a little bit and his family asked us to — asked me to speak
at his service and the pall bearers were the all Caucasian members
of the class that carried the thing there and he, in some sense,
found comfort in the idea that — which would be a Christian
idea, that life does not cease at the end of — so I see this
story really as the universal story cast in maybe almost in a stoic
fashion. You know, there's no hope for anything, but let me
just be buried in the beautiful forest and so forth and that would
be what the hope is, but I think it was more about — and I
have met Dr. Selzer and heard him, talked to him a little bit about
some of these things before. I think he was really writing about
the universal anxiety about non-being, about finitude and I think
physicians have to — even if they, themselves, have no hope
or no faith or anything, they have to be willing to deal with this.
And somebody asked the question, you have to say, "Well, I
wish I knew the answer to that. I don't know the answer to
that," and so forth, but the physician can always be a companion
on the way. I spoke at the death of a Professor of Emeritus who
you probably saw in the New York Times here and so forth,
and the first thing I said, I mentioned this to Leon, at the service,
we talked about good death, I said, "Death is always serious
and it's very often somber, but there is such a thing as a good
death and Morris Ziff had a good death for two reasons. There was
a respite before he died where he got to talk to the family and
so forth, and he died quickly from a heart attack, not from his
heart failure and being on an intubator and so forth and so on,
and he always wanted to die easy, which he did. And secondly, he
was not alone when he died. His family was there and I happened
to be in the ICU when he died." So my view is that this is
different from what — maybe not different but I think this
is what he's addressing is the sort of universal boundary of
non-being that — and do you know what, I suspect that I'll
probably be, if I have time to think about it, I'll probably
be a little scared too.
I'm trying to — gray matter, there was a famous Communist
atheist and I've forgotten his name, Bloch, Bloch was his name,
and he was the one who coined the phrase "The great perhaps."
He was a vibrant atheist, but very thoughtful. And as he contemplated
finitude, he talked about the great perhaps. In fact, one of his
students, when he was dying said, "I'm going to look for
the great perhaps," you know. Well, I think that's what
this is about. And this very long answer to your question is, I
think the very best physicians — I've already said that
you can be an excellent physician without compassion and not the
ability to do like Dr. Selzer could or many — but the best
physicians even when their black bag is empty, are still physicians
there. You know, even when the black bag is empty, they have a
role as physician.
CHAIRMAN KASS: Could I just draw you out a little more,
Dan? I mean, you — just very briefly.
DR. FOSTER: I'm feeling sorry for the Council having
to —
CHAIRMAN KASS: No, no.
DR. FOSTER: I've talked more at this Council than any
meeting I've ever been to. Yeah, go ahead, what do you want to
challenge or —
CHAIRMAN KASS: No, no, no. It's — it really is
— the very last thing that you said, and I think your diagnosis
of what's being addressed and maybe even with the psychic equivalent
of the scalpel, Diana, is this kind of terror or doubt. And to
extirpate that kind of fear by this kind of speech, or extirpate
might be too strong and maybe that's the surgeon's view
of what he's trying to do, but is it in your experience common
that one explicitly somehow speaks to that fear or is it sufficient
to be somehow present and somehow tacitly address it, but not explicitly?
I mean, does — let me put it more generally: Do the best doctors
help their patients to die?
DR. FOSTER: Well, I don't know whether you can —
I guess the answer is, yes, at the very least by presence, which
is there. I came one morning on a Saturday morning, I often times
start at the top of the hospital and go down to the emergency room,
just to see people that you run into even if I'm not on wards,
and I came to the cardiac intensive care unit and one of our residents,
Cathy Dotson was sitting there weeping, I'm talking about young
people now, not people like Paul and me, who have been around.
And I said, "Cathy, what's wrong?" And she had a
young woman with a postpartum cardio-myopathy. She was dying in
congestive heart failure. It's a six-month old baby and she
had — this is before the 80-hour rule that you can't work
more than 80 hours a week, and she had — Cathy had stayed
not only her night before in the unit but this night also.
And what she did was she sat all night with this 22 — I think she
was 22-year old Hispanic woman, holding her hand all night long
and there wasn't a thing in the world that could be done for
this cardio myopathy except a heart transplant and there wasn't
any way that she was going to get it. And I said to her as she
was pouring the tears out, I said, "Cathy, I want to ask you
one question." And she looked up to me, and I said, "Did
it make a difference that you were here?" That's a question
that — and immediately her tears began to drop because she
knew that it had made a difference. The young woman died within
the hour, that she was there to hold — she didn't offer
anything medically but she was there as a companion, so at the very
least.
Now some times questions are articulated that are specific,
you know, that one may answer you know, but at least there is the
presence, and if somebody invites you to come — let's say if
somebody has a — that somebody has a religious faith or something. If
they invite a dialogue there, I think that's perfectly acceptable
to do. Never forced, I mean, it's not — one doesn't come in
and force one's views on the patient, but invited one may say,
"This is what I hope or this is what I believe".
Nobody ever gets mad if they say, "This is what I
believe". What they get mad at is if you say, "This is what
you have to believe", you see. That's the difference.
That's a long answer, but I think the one thing that Selzer did, if
he's writing about himself and the boy, whether the boy is real or
imagined, is that there was a human connection there that was a sort of
however it ended up, that he was connected to this boy in a way that
conveyed to the boy a sort of love.
CHAIRMAN KASS: Thank you very much. Bill?
DR. HURLBUT: I think this essay addresses the question
that we were trying to ask yesterday about the mysterious question
about whether there is such a thing as a good aging and a good death
and how technology plays into that, and how that relates in turn to a
more primary quality in human nature and human culture that is in a way
being swamped out by our advancing technology and our interventions
against nature. It basically asks the question — and I completely
agree with what Dan just said — asks the question of the universal
problem of the reality of natural death.
To me the interesting — I think you mentioned already here
beyond the comment that the — what's this phrase exactly, the boy
is the square root of the man or how does that go? It's
interesting just before that he says, "It's well-known that
mathematicians reach the peak of their genius in their teens", as
though he's saying the square root being the solution to a
mathematical problem that maybe something beneath our — what he calls
the professional pose or the unnaturalness of the hospital is part of
our solution that as a physician, we have to be careful to sustain our
receptivity to the subtle influences of the intuitive, what he refers
to as the secret initiation of primitive right that he's leading
the boy through.
And I think there's a comment in here about
technology. I mean, it's a very prominent thing he says.
"The story, Atrium flies in the face of science. It tries to keep
the mystery of life from being mowed down by the juggernaut of
technology". And I think he's saying that the physician in
the modern world anyway, is strangely participating in that.
CHAIRMAN KASS: Diana again, please.
PROF. SCHAUB: Yeah, I want to — it's sort of on this
question of technology. I want to say something on behalf of the
nurse, because the doctor, who is the author of this story, gives her a
rather hard time. He sees her as characteristic of the coldness and
the falseness of the modern hospital, that she's cheerful and
professional and that there's something false and untrue about that
approach to death. And he contrasts the approach to death in the
hospital with the approach in the hospice. I mean, he says this in the
explication, that in a way what he offered the boy, this vision of
death, is something that one would find in a hospice rather than
something one would find in a hospital where one would be denying death
and confronting death and staving off death.
But it turns out that this nurse is the one who spends the
afternoon with him taking the dictation of the letter and promises to
deliver the letter and does so. So that you know, I mean, in a way
what I'm suggesting that the doctor in the story is not the doctor
who writes the story. I mean, that even though this is
autobiographical and he uses his own name, he is conveying certain
things to us that go against what the stance of the doctor himself in
the story. I also think there are things you could — he's trying
to do something with technology in that image of the fountain also
because he tells us that the fountain, which is the heart of the heart,
right, it's the heart of this atrium, that the fountain appears to
be water in motion, like matter in motion, right? This is sort of a
modern conception of the world, just a kind of chaos, matter in motion,
these overlapping circles.
But then we learned that actually the substrate of the fountain
there is actually a foundation and a structure. There is something
solid. There is this pipe with the tunnels or what do you —
the funnels branching off from it. But then that's odd too,
because that suggests a kind of mechanism, right, it's a recirculating
pump. So you have the — and that what presents itself as
matter in motion is also maybe something mysterious. I mean, that's
what's beautiful. And the mechanistic trunk is not very beautiful.
So it seems to me he's doing all kinds of things with
that image and flipping it and playing with it to try to figure out
this question about technology and modernity and mystery.
CHAIRMAN KASS: Paul, have you got something here, doctorly
speaking?
DR. McHUGH: I was wondering when you'd get around to
asking me and preternaturally quiet. I was very — I'm very
interested in hearing what you all read into this or read from this
because you read this as patients. I think Rebecca is correct that
this is a doctor himself, but I think the reader is, as they often do
with doctor stories, they read them as patients and wonder and think
about whether they would find in this doctoring interaction comfort or
not.
And so I,too, kind of sense doctoring as Dan says, is first competence
and then compassion, because compassion having an empathetic thing,
I began reading this as, first of all, would I do this to a patient,
would I speak this way to a patient and would I, on the other hand,
get anything from this? And on those reflections, I absolutely
agree that this is a book that tries to speak about how the mysteries
of life have been mowed down by the juggernaut of technology.
Well, in point of fact, this guy's been mowed down by the technology
— the juggernaut of pathology in his own spiritual view of
this. He has reverted to a pantheistic position and the best he
can say for his last day on earth is he's going to merge with
the moss. Well, you know, first of all, I'd never say a thing
like that to patients, never. I talk to a lot of patients at the
end of their lives in various kinds of ways, just like Dan does,
and what we talk about is not, "Gee, we're going to slip
off into the sounds of the crickets". We talk about where
we came from and who we are and who mattered and how their love
for us made it possible for us to flourish and whether we did as
good a job as they'd hoped for us or not. And in that way bring
them in some way into contact with one another. The fact that we
are people together and somebody at one level cared for us and loved
us and in that way, made it possible for us to go forward.
Now, this is only a 14-year old little fellow and he's a bright
little fellow, but he's also a suffering fellow and he can only
suffer at that level. And I would have — you know, I would
have thought that it was even more accessible to that. This —
let's get it straight, I hated this story and this has its reverberations
in Tom Quill and Jack Kevorkian. It's one day with Richard,
the next day with Jack, and why not get to the moss quickly and
the like.
No sense of who lives with us, who has lived with us, who
has made us what we are and whether there is some form of love itself
that lives and shares with us our own suffering. There is — this is
the result of technology really at the level of disparate and
fortunately, there are much better things to say to people and one
would.
The real question is also whether a doctor — I'm going
on, too. Dan and I both do this. We go on.
CHAIRMAN KASS: This is terrific.
DR. McHUGH: Go on and on.
CHAIRMAN KASS: Is there more to this, please go on.
DR. McHUGH: Well, no, only in the sense of gee, would you
charge in there? You know, this is a kid you're meeting and
he wants to know what are you going to do on your last day and you're
a doctor and especially if you're a doctor that thinks anything
about the psychological and spiritual nature of a human being, do
you plow in and tell him this or — are you not going a little
too far? Where is the inhibition and the sort of sense of gee,
what we all mean to" — now, the story is told that by
doing this, he did the kid some good and I'm always of the opinion
that, gee, I never know what — it's always interesting
what people say, did them good. A great story I like to tell about;
after I had been two or three years at Mass General as a neurology
resident, I was the Chief Resident and a guy comes in to see me
looking very nice and he said, "I want to talk with Dr. McHugh",
and I — he said, "Listen, you did me a world of good.
Do you remember me?" And I said, "Gee, I don't".
And he said, "Well, you saw me two years ago in the emergency
room and I was there with this burning in my feet and I was in pain
and you looked me over very carefully. And it was in the middle
of the night and you took a good, you know, history and you found
out that I had been drinking and drinking a lot", and of course,
he had alcoholic polyneuritis, "And by the way, after we were
through you told me, you know, stop drinking, and I did, and two
years later I'm a lot better and you know, it's very nice".
So you never know what — he was kind of walking out the
door and waved back and say, "Lay off the booze", and somehow
or another the relationship made it possible for something good to
happen and I was, you know, astonished that this happened, because
I've spent hours with people telling them about the evils of drink
and telling them to do this and do that and had no effect.
And so you never know and so maybe this guy does him some
good, but this isn't my way and but is it anybody else's?
CHAIRMAN KASS: Frank is holding back but Frank reminded us
in the last session that there are large parts of the world where this
isn't somehow an aversion to some foolishness caused by the march
of technology, but is an age old wisdom about the interconnection of
nature and the unity of all things and an open minded person would at
least entertain the possibility that what two billion people believe
can't be entirely wrong and is therefore, worthy of reflection.
That would be the general point to you, Paul.
But the boy's in isolation. As far as we know, there
is no family and the exquisite understanding is that, "If I tell
you my name" — I shouldn't bungle this. "Now we are
strangers more or less anonymous. By giving you my name, I become
somebody who can reach out to grab you to capture. You could even want
to grab me".
Now the boy is very wise, obviously, about what it means,
in fact, to nominate yourself in this personal way and at a certain
moment in the story beautifully described, he allows himself to be
grabbed by this hand. This is a boy who's in isolation and one can
only imagine is preoccupied with this end and somehow this is a
comforting tale to this boy or it enables something to happen. I like
— I mean, I've always known that Diana is a spectacular reader but
I've learned two or three wonderful things really that just simply
passed me by in the way of the boy transforms the dream and in fact,
makes a human connection out and therefore, leaves the doctor grieving
for the loss of his connection just for and in need of healing
himself. I think that's quite right.
But I'm not sure that — I mean, the doctor did this
boy — deliberately did this boy a good turn and by speaking to him in
a way that would allay this terror, not by somehow merging with the
moss. That's the characterature but by making seem somehow less
terrible the — making it seem slightly less absolute the transition
between being and not being, so that something could calm down and
he's capable somehow of making something of these last moments and
indeed to reach out in response and maybe give back a gift greater than
he received.
So and we can quarrel with the theology here. I knew as
soon as I distributed this story that this kind of pantheistic teaching
would elicit a kind of dissent. I wasn't prepared for Peter's
attack on noble lies, at least worries about whether people who want
the truth ought to be given a tale which is edifying or at least
edifying for them but humanly speaking this story is a successful act
of healing, at least as I read it.
And maybe the doctor had enough intuition to see that a
speech about all the people who had done him a lot of good or what you
say about the nurse is right but when she says, "We'll have a
transfusion", we, this boy is too smart to be gulled by that and
it doesn't do him a good turn. There are certain other people for
whom that would be fine but you've got to know the individuals
here. And maybe this doctor intuits what this particular human being,
how he needs to be spoken to and has found a way to penetrate that
terror in a way that can be accepted. That's more than
compassion. It's a different kind of competence if you will, a
competence to know — to recognize who's in front of you and how to
speak to them to give the kind of comfort when the black bag is empty
but the rest of the doctor's augmentariam is not. Frank?
PROF. FUKUYAMA: Well, I don't know. I don't see
why you keep insisting that this is a story about doctors and their
appropriate role because it seems to me that what this doctor did is
something that any human being could have done. To me what was
interesting was not that this told you something about the specialized
question of what are the duties of a doctor to a patient, but it
actually reminded me that in a certain way, doctors are privileged
because they see people in the situation of that boy.
The rest of us are so insulated from death and dependency
and that kind of need that we never think about it. And I've
always thought that it's kind of a privilege of not just doctors
but care givers generally, you know, that they have stories like the
one, you know, Dan told or Paul that, you know, that the rest of us
just don't have access to and it gives you, I think a very
different view of what human life is like because you know, there's
this Allistair McIntyre's book "Dependent Rational
Animals", he begins it by saying that especially Americans have
this view of, you know, the kind of self-sufficient independent, you
know, individual is kind of an ideal type and that's what we look
up to, but you know, the reality of so much human life is that in fact,
we're deeply dependent and needy and so forth.
And so it's always seemed to me a kind of privilege
that doctors had, you know, had access to this sort of, you know,
insights about what human life is like. So that's what I thought
was what I liked about the story.
CHAIRMAN KASS: Let me just respond. You picked up also on
what Gil said. I didn't mean to say that this was uniquely an
office that a physician could render. The question was whether it
could be — whether it should be seen as an integral part. I mean, I
don't know any doctor. I don't know any doctor who would —
other than this one, who would be inclined to say, "The sick are
my kind".
And the question is whether that's a failure of the way
in which we've somehow instructed physicians to somehow understand
that as the basis of the bond because, look, what we did yesterday, I
mean, you're talking about when you're dealing with the
patients with dementia and the distinction between those who are
looking for pharmacological means and those who are talking about
standing with the patient and keeping company. And so much of the
success of our medicine really has been to arm the doctor to be a
better fighter against the illnesses. The question is whether it falls
to others to do what has to be done when the fight is lost. It's a
very strange thing, a very strange thing that doctors and one should
probably more likely say nurses, since there are more there than the
doctors are, preside over the entrance or the exit from life.
That's a very odd thing. I don't deplore it. I'm not
saying we should, you know, have births at home and nobody should die
in hospitals though if you could avoid it humanly speaking, better, but
it's very often too much to impose upon anybody to give that kind
of care under those conditions.
But it's odd. I mean, the priests attend, the minister
attends these ultimate moments rather than the person of medicine
though at one time and Dr. Pellegrino can comment more deeply than I
can by a lot, the distinction between the doctor and the priest was
much, much less and the questions of what medicine healed were much,
much richer. And so part of the question is, if we're worried
about the medicalization of so much of life but we have a shrunken view
of what the medical vocation is and can embrace, then I think we've
got even more problems than simply the technologies themselves,
especially if the presiders over the uses of these technologies and the
people who are in charge of those places where we are born, get sick
and die, are people who do not regard this particular thing as part of
their vocation, that that belongs to people who have been rendered
invisible or in some ways less necessary because the doctors can do
more about death or more of life than anybody else can and therefore,
their status in relation to these things naturally rises. That was the
point.
This is an office of a human being but the question is, is
that extra and added to the medical vocation or is it somehow intrinsic
and do we have to worry about the character of the medical vocation
increasing. I think that came out all right. I mean, that was my
motive in putting this before us. Gil and I won't keep us long
because we've got public comment. Four people want to speak and
then we'll close it off. Gil, Paul, Bill and Peter.
PROF. MEILAENDER: Yeah, this is really just to repeat
something I said earlier, but without denying at all the truth of what
you've just said or that it's a salutary lesson to draw from
this, whatever we call this story or whatever, I just want to repeat
that I'm not — as a reading of the story, just as a reading of the
story, I'm still not sure that the man ministers to the boy rather
than the boy to the man in terms of who takes the initiative in this
encounter, who's diagnosing whose problem, and who finally helps
whom to face death.
Just as a reading of the story, however, the lesson you
draw from it, I'm not quite persuaded yet that that's the first
thing the story is about.
CHAIRMAN KASS: a point taken and embraced. I agree with
that comment. Who was next? It was Paul.
DR. McHUGH: Well, as I say, I'm very interested in
what you all are saying about this. I want to draw another analogy
though to our Council and its stories, in particularly to your
relationship to your last comment about how technology has deprived us
of certain kinds of things and I, of course, believe that technology
has deprived this person of any — this doctor of any appreciation of
the fullness of human love and affection and the deep side of that.
We began, after all, reading the "Birth Mark" and
the "Birth Mark" had as its theme the person was employing
technology and forgot love. And when he forgot love, death resulted.
Here is a doctor now long afterwards with technology at his beck and
call, and the best he can do is not to summon up anything other than
what he says is the unexpressed love between him and the patient but
cannot speak about anything other than this strange falling into
darkness, an almost Homeric vision of the darkness came over him and
that was it.
And that's — every reader is idiosyncratic as he reads
and this is what I take. I take it that this is Hawthorne demonstrating
to us just where we're going.
CHAIRMAN KASS: Bill.
DR. HURLBUT: That, I like a lot because the "Birth
Mark", the overarching theme of the "Birth Mark" was an
intervention against imperfection and then the loss that comes with
that. I think it's plain in this essay, this little story that
he's decrying a falseness of the fountain, that it's — he
said, "It's an attempt to disguise the true nature and purpose
of the hospital. It's a denial of death in mechanical terms — in
architectural terms", rather. And what strikes me about this and
the way it connects with our first — the way we opened our Council
three and a half years ago, is how we need to be so careful now as we
go forward with our new powers and understanding of the mechanism of
nature that we don't mechanize reality to the place where we
extract and we distill out the — or we lose the sense of the meaning
and myth and story that reconstitutes and preserves this boy's
existence. It's the telling of the story that makes that personal
being sustain.
The hospital and the whole bargain with medicine is
basically — it's a bargain. We seek a remedy for health against
the entropy of natural death and disease but we take a position against
the natural in doing so. We emphasize intervention and rescue and we
create a kind of discontinuity and almost a kind of desperation and I
spend many times sitting in those hospital — many hours sitting in
those hospital cafeteria types. They always try to make them look a
little nicer. They're very eerie places, like the — what do you
call the flesh of that tree that cadaverous flesh. They're like
that.
The point is that medicine so easily could slip over into
an anti-natural enterprise that from which we then lose our connection
with reality and I think he's actually decrying the fact that
medicine and doctors often do not feel like the sick or their kind. I
think he's saying that — I think this is a warning about modern
medicine actually in here and its inability and its strong antagonism
towards the natural, it's inability to sustain that longer
overarching sense of the integrated wisdom of living in a world where
the sirens never cease.
CHAIRMAN KASS: Thank you. Peter, take the last comment,
please.
PROF. LAWLER: Very quickly. I think what's wrong with
your interpretation, frankly, to agree with Gil is, there's no
evidence that the boy is filled with any terror that needs to be
remedied, right?
CHAIRMAN KASS: Say that again.
PROF. LAWLER: The boy is really not filled with any terror
that needs to be remedied. He seems to be facing up to death
honestly. And not only that, the doctor is sort of an odd man,
right? He spends all day writing by himself. Then when he goes to
lunch, he sits in an atrium all by himself and its architectural denial
of death. And the story says the only thing that gives the atrium any
dignity or taste is the boy. And then it contrasts the boy's —
the boy's life with the forest, which is devoid of anything human,
anything human which is good and anything human which is bad. And so
this man — I mean, to make a long story short which in filmland,
it's almost like this man invents an imaginary friend to love. I
will stop.
CHAIRMAN KASS: Diana is entitled. Please.
PROF. SCHAUB: One more point about the text and the
fountain. I mean, you begin with this deadly fountain but at the end
— I mean, this is a way to say something in defense of the doctor, I
think there is a real transformation of him. He says that by the end,
the boy has become like a fountain in his mind. I mean, yes, maybe an
imaginary friend but still it's a new friend that transforms him
and he actually does now change his own vision. It's not that
forest merging with the moss and the bark. I mean, the last words he
says in the story proper before the explication is that,
"Sometimes I speak to him. With your eyes I tell him lift this
tree up, up until it touches the sky so that you can climb it all the
way to heaven". I mean, there was no vision of heaven in that
first dream and now there is.
I mean, he says, you know, "I had a failure of nerve
before. I would not go past that point of the moment of death,"
but now he is actually envisioning that so and it does seem to be
triggered by his love for the boy.
PROF. LAWLER: Yeah, that's exactly right, to
intervene. So Paul, I agree with you 98 percent of the time but in the
final analysis, this story is about the redemptive power of love. So
the pantheistic thing is not the bottom line.
CHAIRMAN KASS: Astonishing. Really, thank you very much for this
discussion. I think there's — there would be enough to
start with at least to continue reflections on the limitations of
the character of the medical vocation under these particular circumstances
should we be so inclined.
SESSION 7: PUBLIC COMMENTS
We have two people who have asked to make public comment and if
the Council members would be willing to sit without a break, we
can have the comments and then leave. Our two guests are first
Michael Houser and the Susan Poland. I remind the guests that you
should keep your comments to five minutes or less. Welcome,and
Mr. Houser, if you'd please come to the microphone.
MR. HOUSER: I want to read this, do my best.
First off, thank you, Dr. Kass and thank you for the Council. And
second, I'd like to note something from a bio that I've
read of Dr. Pellegrino. It's a quote which I'd like to
paraphrase. Something happened to him as a young man. "Substantiate
your point. Whatever you freely assert, I freely deny by the same
loose argument," is what I'd like to note.
Two Protestant boys, my brother and myself, got the same lecture
or sermon from their father. His sermon was very short. "Know
whereof you speak." He never told you where the quote was
from. It was yours to find. But basically eventually I found it
and it was from Paul in his Mars Hill apologetic. I leave it at
that.
I'm not here to lecture, debate, so I'm going to just be
brief and I'm going to try and cover a couple points. My purpose
in coming here is two-fold; to observe the Council in person versus
read a flat transcript; you're quite impressive, all of you.
And the second thing is to state that an assumption of surplus embryos
through IVF is not a given. I'd like to cite John Biggers,
Dr. John Biggers, "When to avoid creating surplus human embryos."
[Human Reproduction 2004 November 19 (11): 2457-9]
And I've given that abstract to Diane.
Related to this point, I'd like to say something on
informed consent and I'd like to say it as a dual citizen, Ireland
and the United States, and that many things that are said here really
effect the world. So I'd just like to remind the Irish Medical
Council that their ethics guidelines are clear. a physician must state
alternatives as well as benefits and risks of a procedure. Informed
consent is not just a signature.
And lastly on what you've been discussing and more or less
getting with the program as it sits now, I'd like to not perhaps
comment on Richard Selzer but I'd like to note something on
page 247. He says, "What would you do on the last day of your
life?" Well, we're all going to get there. Unfortunately,
my father passed away on this very evening six years ago. And I'd
like to read a poem that my parents liked and I think it comes from
the perspective of people enjoying life in Tucson and so I'll
just get to it. It's called a Pueblo Indian Blessing.
"From seeds we sprout and blossom, we give forth our fruit
then go onto life end. That's how it is." I should say
that's how it's always been. "Endure the storms, thrive
in the sun, breathe deeply and be grateful for your life".
I can't do better than that, so I want to thank everybody and
hopefully, I've said something important.
CHAIRMAN KASS: Thank you very much, Mr. Houser. Appreciate
that, thank you very much. Susan Poland? Welcome back, nice to
see you again.
MS. POLAND: Hello. I'd like to congratulate
both of you, Dr. Kass on a job well done and Dr. Pellegrino on assuming
the mantel. I'd like to make two comments generally, one on
bioethics and one on public — going out to the public today.
With bioethics, I think this Council has done an
outstanding job on putting bioethics, on enriching it by putting it in
context both with the literature and with using the national bodies
that you had people come and testify. I had not seen that in any other
group. That being said, recently in the June issue of the Kennedy
Institute of Ethics Journal I wrote a short piece on bioethics,
biolaw and western legal heritage which actually shook my faith in
bioethics looking at what was happening in Europe and looking at ours.
And to that extent, I will agree that you should look at non-Western
systems, particularly China, which has Confucian values with the
Communist system and how that interacts.
And then still under bioethics, I recall Francis Collins at
a meeting that we went to talking about why is the National Human
Genome Research Institute the only one that's looking at ethical,
legal and social issues? Of course, everyone knows it's because of
James Watson putting that in. This Council, because it is national, is
in a unique position with the Executive Branch, to recommend to the
President that all agencies and departments look at the ethical and
other issues of their department, particularly in light of the fact
that with us working at Georgetown with the National Library of
Medicine Grant, we're confined to medicine and medical ethics and
such. We really don't have the funding nor the mandate to look at
genetically modified food or anything else along with that, the animal
research and stuff. And so I recommend to the Council that you
consider doing that.
My second area has to do with the public of which I've
been one here in many of these meetings and I will congratulate you
because you probably situate your meetings the best for public
transportation. Given that they're in Washington, that really
helps but usually that's what you do maybe unconsciously. And when
you do want to look at reaching out to the public, I want you to
consider whether you want public presence or public participation or
both. One of the positions that I fill is with Case Western Reserve
University because they are now a Center for Excellence in Ethics and
Research and under them, they pay for some of my time to go around to
different meetings.
So some of the meetings in the last year that I've been
going to do very well with reaching out to the public, I think, and
things that you could consider in modifying here. One is the
Secretary's Advisory Council on Genetic Health and Society. Sorry,
I have to read these acronyms. What they do is they actually have
panels come in of public. They had a very moving one which is the most
moving panel I've seen yet, is a group talking about genetic
discrimination that these people actually had experienced and it was
probably some of the most moving testimony I've seen since I've
seen Jesse Gelsinger's father testify to Congress.
They also web cast their meetings, which would get this —
it's better than a flat transcript but it really is not as good as
seeing you in person, but it will get out to other countries. The
other one which does a much better job in some different areas is the
Secretary's Advisory Council on Human Research Protection and they,
right now, are looking at revamping the CFR and one of the areas is
children.
They've been discussing a lot about what to do with
well children, sick children, what are risks, what are limits. So in
your future, I would suggest looking at them. The thing that's
distinctive about them is that when you walk into their meeting room
and they meet regularly in Alexandria, the other one meets regularly in
Bethesda, they do not sit in a circle away from the public. They sit
in two sections of halves and those members are there and there's a
podium in the middle and behind each half there's a screen so that
nobody in the room is having a problem because there are two screens
facing at angles.
So you have the public back here but I was taken back
because the room was practically full and I couldn't find a seat.
Why? Because they have a whole group of ex officios so they don't
just have people that are from around the country, but they have
people within town, they're actually assigned there with different
departments which surprisingly because one of them is the CIA, because
they wanted to create harmonization rather than be a conflict and them
slow down their work.
I don't know if your ex officios would be congressional
or it would be judicial members or where you would pull them from, but
that made a lot more participation because they could ask things
throughout the meeting and get some immediate response. They also meet
outside of the regular public meetings so they know what they're
talking about. There's one person assigned that meets with them.
The screens and the setup I talked about so the public
feels like they're already part of the process because the podium
and they're talking more to the public. And these people are
around here taking notes and of course, typing. I, myself, am paid to
monitor these meetings, not just for Case Western, but for the other
three Centers for Excellence because National Institute of Health, the
Institute that funds us, is watching to see how well we collaborate.
And lastly is public comment itself. Public comment with
that particular group one of the more interesting sessions the man that
was the head of a med school, I believe, from the Midwest, had flown
out and was appalled at what they were doing about adding more and more
layers that they never even get to when they're looking at doing
research. And he was frustrated with that, but he was also asked to
have public comment in the middle because his schedule did not allow
him to wait until the end of the meeting two full days. And so this
group had always had public comment at the very end. I'm always
witnessing people leaving and such. I would like to see public comment
more — and that goes back to my original comment about reaching out to
the public.
It's not just going around and doing a road trip but
it's the question of do you want presence with the public or
participation? Thank you.
CHAIRMAN KASS: Thank you very, very much. I'll say
only one tiny thing, I'll say two things. One, I'm glad for
Dr. Pellegrino that he has these comments at the start. I could have
used them earlier because some of them are really very, very fine
suggestions. One comment just on the shape of the table; that was my
doing and my doing based upon having been a presenter at NBAC and other
such meetings where you have the August people sitting here and the
audience out there. It runs the risk of being theater. It runs —
especially in Washington with hot issues like this, when there are
people out there scribbling, I would like to create the climate in
which we try to pretend that we're not — we don't have to
somehow trim what we have to say because there's somebody out there
who might take it amiss. So that we should try to have the kind of
conversation — don't take this in the wrong — as if we were the
only people in the room, not because we don't care about who's
here and participating but because I don't want the conversation to
be distorted by posturing and by theater and by a worry about the
press.
So to produce a kind of more intimate setting, where people
might forget and in fact, have a much more honest conversation, that
was my insistence and that it produces a greater distance, I
understand, and there are other ways — there might be a way of trying
to do both, but with these delicate topics and lots of people afraid of
saying something, I would like them to be as little afraid as possible.
MS. POLLARD: That's fine. If you could
just also put a map out. I mean, some of them have it and if you
sit regularly, you start knowing people's voices, so I know
people sometimes a lot more from the back of their heads than the
front, but one of the groups would have a map saying who's sitting
around that table and who's at what chairs because it is —
while they're nice looking signs this time, they are harder
to read.
CHAIRMAN KASS: Thank you very much. Look, the hour is late.
We're just about ready for adjournment. Let me simply say very
briefly on the record, first of all, what a privilege it has been
to have served as Chairman of President Bush's Council on Bioethics.
For a first generation child of American immigrants to be given
this opportunity to serve is just a great blessing. To be able
to serve in the company of such thoughtful, serious, public spirited
and by and large collegial and always, always respectful colleagues,
it's an experience for a lifetime and I will treasure these
days always. I'm happy to say that it's not fare well and
au revoir and I look forward to sitting not in this seat but with
my back to the audience if Ed will continue to keep this arrangement.
Thank you one and all. Godspeed and we will meet again under new and
vigorous leadership.
PROF. GEORGE: Leon, I don't want to steal your thunder
here but this is going to be probably the only chance in my tenure as a
member of this Council to say I speak on behalf of every member of this
Council and I want to say on behalf of every member of this Council,
thank you, not only for your leadership but for the example of
integrity, humanity and, indeed, nobility that you've set for us
all and for the nation. Thank you.
(Applause)
CHAIRMAN KASS: Thank you and we are adjourned.
(Whereupon, at 12:04 p.m. the above entitled matter concluded.)
