Meeting Transcript
September 7, 2006
COUNCIL MEMBERS PRESENT
Edmund Pellegrino, M.D., Chairman
Georgetown University
Floyd E. Bloom, M.D.
Scripps Research Institute
Benjamin S. Carson, Sr., M.D.
Johns Hopkins Medical Institutions
Nicholas N. Eberstadt, Ph.D.
American Enterprise Insitute
Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School
Robert
P. George, D.Phil., J.D.
Princeton University
Alfonso Gómez-Lobo,
Dr.
phil.
Georgetown University
William B. Hurlbut, M.D.
Stanford University
Peter A. Lawler, Ph.D.
Berry College
Gilbert C. Meilaender,
Ph.D.
Valparaiso University
Diana J. Schaub, Ph.D.
Loyola College
Carl E. Schneider, J.D.
University of Michigan
INDEX
WELCOME AND ANNOUNCEMENTS
CHAIRMAN PELLEGRINO: Good morning. Try to keep our custom
of beginning on time and we plan also to end on time.
I'd like to welcome you all to a meeting of the
President's Council on Bioethics. My first action has to be to
make us legal. To be legal, we have to recognize the presence of the
Designated Federal Official, Dan Davis, who is the Executive Director
of the President's Council.
****
SESSION 1: ETHICAL AND PHILOSOPHICAL ISSUES IN THE DEFINITION OF DEATH
I think we can proceed to the meeting itself. We have
revised the agenda in just one case. Moving the discussion of living
donation to session two and the discussion of the criteria for death to
session one. That is to accommodate some of the people who will be
opening the discussion. I hope that is acceptable.
Our previous discussions have been focused largely on organ
procurement and today we have a number of relatively unexplored but
very essential areas especially in the light of a potential report by
the Council, and I say potential.
We will be looking at today the criteria of death, the
question of living donation, the ethics of organ allocation, and some
reflections on current and proposed policy.
We will be proceeding in the following way. The staff has
been working hard all summer on preparing summations of each of those
issues which have been distributed to the members of the Council.
Staff members will be here available for clarification but
the work they have done is a summation of discussions with all the
members of the Council — not of the Council, excuse me, of the staff
during the summer but reflecting on the discussions and contributions
of the Council members in the meetings that led up to the summer.
I want to express my gratitude to all the staff who have
worked hard during the summer to put this material together. We hope
that it will serve to bring you up to date on where we are at the
present time and to lay open the areas we need to discuss further and
the ethical issues, particularly those that may not have been addressed
by other groups who are also studying this very, very important
question of organ donation and procurement.
We are not looking forward to the outcome from this meeting
of a set of recommendations by any means but rather an intermediate
step in which we step back and look at where we have been, what the
issues are before us, and what directions we might take in the future
and how much emphasis we might put on each one of these subjects which
I have enumerated for you at the beginning of the session.
I'd like to begin with the first session on the criteria for
death. And that paper has been prepared by Alan Rubenstein. Alan
is here at the table. Eric Cohen, who acted as overall editor of
all of these papers, is also to my right. And, again, I re-emphasize,
they are here to respond to questions of clarification.
The papers have been distributed and our interest really is
the response of the Council members and to give them an opportunity to
give their thoughts on these issues which we have raised.
To open up the discussion, we have asked individual members
of the Council, and they will be enumerated later on as they come up to
their subjects, to open the discussion, to provide us an entry into it.
And from that point on, it is open to the Council members to carry
the discussion further.
Our first discussion catalyst will be Dr. Ben Carson, a
member of the Council. It has been our custom, for those of you who
are here for the first time, not to provide extended autobiographical
or biographical summaries. And, therefore, we will not repeat what is
in the book itself.
Dr. Carson will open this discussion. And I will ask him to bring
us into the issue and, as they say... in medias res.
DR. CARSON: Well, thank you very much.
You know this is — first of all, let me congratulate the
staff for being able to take so many philosophical opinions and boil
them down to a 50-plus-page treatise here. That is quite a task.
You know one thing becomes apparent and that is it is very
difficult to gain uniformity in terms of defining anything. And as a
neurosurgeon, obviously I've unfortunately had to deal with the
whole issue of when someone is dead frequently, principally surrounding
brain death.
In this paper, we talked about different types of brain
death: whole brain death where really nothing intercranially is
functioning in any adequate way versus, you know, the British standard
of brainstem death which is mostly the only things that are left are
reflexic in nature.
And each of them has, you know, their advantages in terms
of trying to define things. And there is, you know, physiological
criteria of death as put forth by, you know, the Harvard criteria.
I don't know that we will have the possibility of
really being able to define which one of those things is real or is the
most factual because one thing becomes clear.
And that is people's religious beliefs, their feelings
of whether their moral standards are being violated, questions of
whether scientific standards are being violated enter into each one of
these things. And I don't know that there is any way to bring that
all under one umbrella.
There is quite an extensive discussion on sort of to get
around some of those moral issues, donation after cardiac death. That
way if you allow the heart to stop beating and, therefore, the brain to
stop being perfused and all the other organ systems to die in the most
traditional sense of death, then you remove a lot of the moral issues
that have made this so controversial.
Now obviously, the issue there being now you are beginning to compromise
organs that you clearly want to donate. Now interestingly, some
people have said let's just go around the whole idea of when
death occurs and let's think about what is practical. And let's
think about how we are not violating the rights of any of the interested
people.
Let's say, for instance, an individual has decided that
they want to be an organ donor. They have indicated that on their
driver's license or elsewhere. The family is in agreement. But
they are clearly not brain dead. Why not go ahead and procure those
organs? And, you know, a very, you know, cogent argument was made for
that.
You know I can remember an instance several years ago when
I was a resident, New Year's Eve when a very prominent lawyer in
the Baltimore area was involved in a motor vehicle accident and became
a C-1 quadriplegic. And he still had full retention of his mental
faculties and requested that life support be withdrawn.
And the question comes up could a person like that who has
full retention of their mental faculties also request that their organs
be donated? And I think that is a very legitimate question.
There was a footnote that mentioned that possibility but
there was really no discussion in this paper but I think that is
something that is worth discussion because we are looking at the ends.
And in the end, his request was granted after a great deal
of ethical discussions with everybody on the face of the Earth. But if
he is allowed to die, why wouldn't he be allowed to allow his
organs to be gathered? And this is not something that I can see that
has been discussed in a very important way.
The whole idea of the rights of the family enters this and
really makes it complex because — and I certainly have been in this
situation where you have to give, you know, bad information, bad news
to a family. And then in the next breath, you know, ask them for
organs. That is a very, very difficult thing to do.
And, you know, if we can come up with — if anybody could
come up with a way to make that easier, it would obviously help the
situation. A lot of times rather than go through that, medical
professionals simply don't ask for the organs because it puts them
into such an uncomfortable position. And I can certainly understand
that.
So the bottom line in looking through all this is we have
to ask ourselves the question how do we get the organs without
violating our moral sensibilities and, you know, that is the crux of
this entire compilation. And hopefully what we will discuss.
CHAIRMAN PELLEGRINO: Thank you very much, Dr. Carson.
Dr. Meilaender?
PROF. MEILAENDER:Well, I also agree that it is a very
nicely done paper. It gives us a certain sense of historical
development of how we got to where we are in these discussions now.
And it is thorough and thoughtful.
And, in fact, I couldn't quite decide what sort of comments
from me would be most useful as a way to begin the deliberations.
So I want to do a couple things.
First, I want to point out — and, I mean, this is in the
paper — it's not something original with me, but I just want to
point out why we might be tempted to punt on this issue. I think there
is a temptation there.
I'm not sure I think we should punt on it but I just thought
it would be useful to highlight this fact that the paper itself
has. And then after that, I'll mention just a few — three
theses that seem to me to be truths to which we should adhere, however
we go along, though they may not seem to truths to you. You will
have to see whether that is the case or not.
But first why we might be tempted just to sort of take a
pass on this. I think what the staff paper very nicely shows is that
we find ourselves right now in a situation characterized in this way.
One the one hand, the issue of brain death as a theoretical
question is by no means settled. It turns out to be more unsettled
than people had thought or liked to think for a while. So it is a very
much a live question with the problem under dispute.
And on the other hand, brain death, the notion of brain
death has come to be rather generally accepted in our law and in our
practice, even if people in every day life don't always think in
those terms, but nevertheless in our practice we have accepted it.
And it is that fairly settled practice that allows organ
transplantation to proceed if not perfectly or in the numbers that some
would wish, at least relatively undisturbed.
And to push on the theoretical question is to disturb that
relatively settled practice. I mean I think the paper did a nice job
of showing that. We could reach conclusions if we really think it
through that are fairly unsettling for our current practice.
We could, for example, decide that the current practice of
declaring death on the basis of neurological criteria is incoherent and
mistaken, which would throw an enormous monkeywrench into our current
practice of transplantation.
Or we could decide that a person who has irreversibly lost
simply higher brain capacities, as they are called, was dead, which
would alter current practice in a very different and equally unsettling
direction.
So when you think about those possibilities, we might just
be tempted to let sleeping theoretical dogs lie. And not do anything.
And that may be — I mean I don't know, we'll have to see.
That may be what we decide to do.
As I thought about it though, it seemed to me that in some
ways the temptation to do that probably needs to be resisted. At least
one shouldn't give in to it too quickly. And there may be short
of, as it were, resolving the issue, which I suspect is beyond us,
there may be some things that — some sorts of contributions that we
can make.
And the first thing, it seems to me, is that we can take
the critique of the current use of neurological criteria, we can take
that critique seriously.
I think there is nothing more frustrating for people than
to make a really serious case, to have serious claims, to have others
acknowledge that these are serious claims, and then to have those
others just keep on proceeding the way they have been doing as if, you
know, you just wasted your time talking.
I do think that this is a serious critique made by serious
people. And at the very least, we owe it attention and not just to
punt on it.
Another thing we could do, I mean perhaps we could — it
might be useful just to make clear that at best, we are simply looking
for a criteria for when someone is dead. We're not trying to solve
the deeply metaphysical question of exactly how we define it. We talk
about definition here a lot of times but maybe the more modest notion
of just finding criteria for when that once animated body is no longer
moved by its anima would be a sufficient thing to do.
We could — another thing we could do if we thought it
possible although again this may be beyond us — we could try to offer
a better account and defense of the current fairly settled practice if
we think that neurological criteria are persuasive.
The staff paper has a nice account of the somewhat
different British approach. We could think about that possibility for
instance so that could be done. Or we could offer several alternative
approaches just trying to advance the discussion.
But my tendency, at any rate, is to think that it is both
deeply tempting to just bypass this question but probably not what we
should do. So that's sort of the first thing that I say.
And then the other thing is that just in thinking through
where the argument takes us, what the staff paper had to say, it does
seem to me that there are three things that I would hope we affirm,
whatever sort of impenetrable difficulties we may encounter, whatever
incoherences in our current practice we cannot fully solve.
There may be more than these but I'll hold my relative
certainties here to three that I'll mention although as I say, they
may not be certainties for you.
The first one in my own mind is that I think it is
important to know when someone is still alive and when someone is dead
— to have criteria that mark that out for all of us however difficult
it may be to find the right way to do that.
However true it may be to say that in some context anyway that
in a certain sense we all die by degrees, however much our individualistic
tendencies might tempt us just to invite everybody to decide for
themselves when they should be considered dead.
I think we should want to know when another human being is
no longer a living human being. We should know this, in part, because
so long as they are still living, they have a claim on us in certain
ways for the rights and respects that we owe other living human
beings. And also because when they are dead, they actually still have
claims on us of a different sort for taking leave and burial and so
forth.
So I'm not very drawn to what the staff paper describes
as the new pragmatism approach to these questions. I, myself, do not
find that very persuasive.
The second thing I'd say is that it seems to me unwise
to forget that whatever else we may be, we are also animals. That is
to say we share a kinship with the other animals and death, for us,
must bear some similarity to what death for them means.
And I am, therefore, not drawn at all to the higher brain
criteria for death which focus only on those capacities which we may
not share with the other animals. If you have lost — thank you, I
appreciate that. It's always nice to get affirmation from wherever
it comes.
If you have lost a higher brain capacity but you are still
breathing independently of mechanical assistance and your heart is
beating, then yours is, as far as I'm concerned, still an animated
body with the anima still present. That would be my view.
And then the third thing, a slightly different point, I
think we shouldn't lose sight of the fact that among the things
this staff paper takes up, there are some important questions that
aren't just questions about sort of deciding when somebody is dead
or dead enough for transplantation to take place.
And in particular, and I don't know that all of you
will share my relative certainties on this, but with respect to that
newly reemerging emphasis on donation after cardiac death that we
talked a little bit about last time, in fact, with the Institute of
Medicine Report, to me there is a different kind of issue that really
one shouldn't just let get buried here.
I mean I don't doubt that these people from whom organs
are taken after they are declared dead are dead. I mean there is that
tricky issue about permanence and irreversibility and so forth. And I
don't say there are no complications.
But I don't doubt that they are dead but I do wonder
whether we may teach ourselves to come to think of their dying as just
a technicality that must be dealt with — kind of get past in order to
get their organs that we need. And whether or not it is dehumanizing
in some ways to orchestrate death with that purpose in mind.
One of the primary moving factors that got sort of a
bioethics movement off the ground in this country, you know, 30 or 40
years ago was the sense that medicine had sometimes so imposed its
technical capacities on dying that the human meaning of one's death
was lost.
And it would be a shame if we backtracked and lost that
important insight it seems to me. So that's a different kind of
issue but I think it also warrants our consideration and attention.
CHAIRMAN PELLEGRINO: Thank you very much. Now open for
general discussion.
Dr. Gómez-Lobo?
DR. GÓMEZ-LOBO: Well, actually it is the case that I share
most of Gil's relative or new certainties. But I'd like
to contribute to the discussion initially from a slightly different
perspective. In other words, I would like to make first a conceptual
point and then talk about a general ethical principle.
The conceptual or analytical point is that in looking at
the history of the discussion of brain death and all that, I see that
there is a lot of confusion about what is being done. I don't mean
that this is going on in the paper. I found the paper extremely lucid
in this regard.
What I mean by that is the following. It is more or less
common to talk about a new definition of death and that is something
that appears over and over again. And I think that helps to confuse
the issue because I really doubt that that is a correct way to view it.
To define a term "death" is to give the meaning of the
term. And if we give a new definition, we are giving a new meaning.
We are talking about something different. Now that certainly I
find unconvincing because in order for us to have a discussion,
we have to have a settled meaning. We have to be talking about
the same thing.
So my first point would be that to insist that there is a stable
definition of the everyday term "death." And I agree
with Gil that however it is explained, the meaning of death, it
has to match at least mammalian animals and beyond. In other words,
death — when we talk about death, we talk about something
that happens not just to humans but to other living beings. So
that would be my first point. I would insist on that.
The reason why sometimes the confusion arises is because we
do use the verb to define in the sense of to draw a boundary. And, of
course, what is being attempted in these discussions often times it is
to draw a boundary. And in that sense, it is not incorrect.
But it is not the same to define criteria, i.e., to determine criteria
as to define what death means. Now that said, I would insist on
the notion that death is a negative term. It is what is called
traditionally a privation. And Aristotle would call it a steresis,
which means that there is, so to speak, no nature of death. Just
as blindness has to be defined by reference to sight, there is no
nature of blindness. It is just the loss or lack of sight. Likewise,
it seems to me, the common sense understanding of death is the loss
or cessation of life.
And just for the fun of it, even such an authority as our very own Leon,
actually because of that makes a slip in his comments, for instance
— and this is actually in praise of him — he says the
orthodox defense insists on offering the conceptual definition of
death as "integrated function of the organism as a whole."
Now, of course, that's not death. That is life. That is an
integrated functioning of the organism as a whole. So the deep
philosophical question then becomes what is the deep underlying
essence of life and not the definition of death.
Now that brings us, of course, into very complicated issues
and I agree that it may not — we may not need to go into it as a
Council or even as a country because what really matters are the
criteria. Now we have to have some understanding of the life of an
organism to even come to settle on criteria. To say if these
conditions hold, then the organism is alive. If they no longer hold,
if they are lost, if something has ceased to be, then we know or we
have criteria to determine that.
In Capron and Kass's original article, I think this
overlaps with what they call general physiological standards and
criteria or operational criteria. I think that the two can more or
less be taken together.
And then, of course, comes the further element of the tests
and procedures to determine whether the criteria have been met. But to
speak of criteria is not to speak about a definition. It is to speak
about the considerations that should enter into the question of whether
a given definition previously has been met or not met.
So that is sort of the overall proposal in terms of
conceptual clarification. And that is why I like the Institute of
Medicine proposal and the paper also does this is talking about
neurological criteria or cardiac criteria — not cardiac — I'm
sorry, not a new definition of death.
I don't think that brain death defines anything. It
just provides a criteria. But even brain death is, in itself, a
philosophically questionable concept.
Now, of course, this can be further refined. And I think
that in a report on the Council, it should be refined and spelled out.
I think that just clarifying the terminology of cloning was an
important contribution of this Council made in our first report.
Now the second point I want to make is not a point in
concepts but rather a point in ethics. And it is that it seems to me
that the dead donor rule should not be abandoned. We've heard
proposals to abandon the idea that a person has to be dead in order for
it to be legitimate to harvest organs from her.
In the original article, Capron and Kass were very clear on
this. That the need for organs and now the so-called crisis in the
need for organs should not drive our criteria to determine when someone
is dead. On the contrary, I think we should insist on the idea that we
have to rethink, perhaps reconsider the criteria, perhaps require more
accurate tests to be able to see if someone satisfies the criteria.
But all this done independently of the further intention of
harvesting organs. That seems to me is very important. And then, of
course, there is this possibility of someone saying I want to donate
organs. My inclination would be say that is fine but only after life
has ceased.
It seems to me that to go into a living body to extract
organs is a major ethical trespassing into the goods of human beings.
Thank you.
CHAIRMAN PELLEGRINO: Thank you very much. Anybody else?
Dr. Eberstadt?
DR. EBERSTADT: I'd like to begin by saluting the
staff for a fine paper which introduces us to a very important and also
very complicated issue and one, I agree, that we should not turn our
eyes away from.
I have four initial reactions or initial thoughts to offer my colleagues.
First, simply to state the obvious, there is an intense, and I think
we can expect increasing pressure for what to paraphrase Daniel
Patrick Moynihan we might call "defining death down."
And this pressure comes not only from the demands and
realities of the circumstances for the organ donors but also from the
increasing medical expenditures which attend our economy with
end-of-life issues. I think that we will see this economic pressure
continue to grow. That does not mean that we accede to that pressure
but simply that we recognize it.
Secondly, for that very same set of basic economic reasons,
I think that we can expect to see increasing material pressures to
conflate questions of death and viability. And some of those issues
are mentioned in the paper I think very well. This is, again,
something that I think we must be very careful to separate the
questions of death and viability.
Third, I agree with Gil that we should not proceed as if
death is a matter of taste. It is a universal human experience and
condition. It should be recognized as such. And thus, I think there
probably should be universal human death — an issuance of phenomenon.
Fourth, Leon Kass is not here but in the paper that he
provided us with, he mentioned one thing in particular that I think
might be apposite to add to our discussion. And that's the
discussion of the human soul.
Leon mentioned in his paper that if you asked most people
in this country or others — uninformed, non-medical specialists, they
would describe death as the point at which the human soul or human
spirit departs from the body.
And, I don't think that that is specific to the
traditions of — what would we call that — the Abrahamic faiths,
Judaism, Christianity, Islam. I think one would find that also in
Hindu tradition, in parts of the Buddhist tradition, in many of the
animist traditions around the world.
Being — and I think that that whole question of the human
soul is one that we would be — it is very difficult to integrate into
our discussions today but it is also one that we might also wish to be
mindful of.
CHAIRMAN PELLEGRINO: Dr. Carson and then Dr. Lawler.
DR. CARSON: One thing that, you know, becomes apparent
in looking over all of this history and attempts to define death is
that, you know, in the time before we had the ability to intervene with
all of our technological advances, it was a fairly simple thing to know
when somebody was dead.
And I suspect as we move further into the future, the
definitions that we come up with today are going to, you know, fade
into oblivion as well. I mean there may well come a time when, you
know, cloning becomes an accepted norm. And then people say you are
only dead when your cells can't be cloned any more.
I know it sounds strange to us today but that could well
become the case. So I think it is really sort of a moving scale that
is largely based — or can largely be based on technology. And I guess
what I'm trying to say is you know we shouldn't allow ourselves
to be propelled along, you know, that line of redefining things as
technology comes along.
There should be a better sense. And it really gets back to
what you were saying, you know, about the soul or about that part of us
that when gone, no longer allows you to function as a human being.
And, you know, maybe we need to be looking that way rather than at the
things that are created by technology.
CHAIRMAN PELLEGRINO: Thank you very much.
Dr. Lawler?
PROF. LAWLER: I agree with the consensus that death is
something real. This post modern thing doesn't work with death.
You can put soul in quotes. You can put truth in quotes. But you
really can't put death in quotes. Like some people say he is
"dead."
In fact, we are pretty sure that many, many people are
dead. It is not really a matter of an opinion. And the death we die
is real. And it is the death of an animal.
Ben is correct to say there is something creepy about
technology because it used to be death was less controversial. We knew
who was dead. We didn't have to give it much thought. But now
with ventilators, we are not so sure because we have made discoveries
we wouldn't have made had it not been for the existence of
technology.
So human death has become different from dog death for this
reason. Even in an era of pet cemeteries and all that, we're not
putting dogs on ventilators. So we're not going to make the same
sort of discoveries, I hope, when it comes say to our pets.
So we have this ambiguity. The argument for brain death
was without a brain, you can't function as a whole. But it turns
out due to the ventilator, we have discovered that you can, at least to
some extent.
So the organism can be a whole and in a certain way from
the traditional point of view, without a soul in a way, in a
controversial way, because the organism then becomes no brain and all
body. And it keeps going. It keeps ticking literally. So this
presents us with a problem.
The brain death definition, which we thought was true in a
less uncontroversial way than we do now, was very convenient for the
harvesting of — I don't like the word harvesting — for getting
organs for transplant because it is easier to get the organs,
obviously, if the heart is still ticking. And if we abandon brain
death, there is a pragmatic problem of we will have fewer organs.
So we are kind of stuck — we have Gil's let sleeping
dogs lie issue comes up in this way. We can either abandon brain death
in light of the new evidence that is pretty persuasive in the great
paper or we can absorb the new evidence and succumb to the temptation
of taking organs from beings who we don't really think are dead in
the full sense.
And that would be a fatal compromise, a succumbing to the
new pragmatism actually to take vital organs from beings who aren't
dead. So A, we compromise death; or B, we have fewer organs.
Now when the libertarian Professor Epstein was here, he said Reason
No. 906 I am for organ markets is you will soon get so desperate
without them that you will start to mess with death. And unfortunately,
the new evidence presented by the great report suggests that if
we stay with brain death, and we look at the facts, this is, to
some extent, messing with death a little. We are keeping the status
quo while ignoring the new troubling evidence about, you know, the
fact the human being is not as brainocentric as we thought the human
being was.
So what do we do about this? This is not so clear to me
what we do about this. Leon Kass in the memo he sent us thinks we
should work harder in defending brain death.
And he does it in this way — that maybe we can define
death as number one, the permanent cessation of spontaneous
respiration. The organism can never again breathe on its own or
without the ventilator. And permanent cessation of wakefulness without
which an organism cannot perceive anything.
So any being who cannot breathe on his own and cannot be
awake ever again is dead. And all we have to do is come up with the
neurological criteria that shows us when this being is in this
situation of not being able to breathe again and not being able to be
awake again.
The trouble is we are stuck with this. The heart is still
beating and the organism keeps on ticking. And now we know this. So
what do we do?
It's not that clear to me what we do given that brain
death is more controversial than it used to be except to say if we
abandon the standard of brain death, the result will be fewer organs
acquired and the pressure will be greater then to engage in organ
markets and such because it will look really perverse if we A, come out
against organ markets and number two, make it harder say to get cadaver
organs of one kind or another.
So there is a strong argument for letting sleeping dogs lie
but unfortunately, we know sleeping dogs, due to the great report and
the recent studies, we know sleeping dogs are sleeping dogs.
So I'm against the new pragmatism that dumbs death down
and makes death a matter of opinion. Death, as everyone knows —
I'm not an M.D. but I think people know death is not a matter of
opinion. Each human being cannot define death for him or herself in
any strong way.
On the other hand, I'm not so against the technological
orchestration of death in order to maximize the number of organs we can
get. I think getting organs for transplant is a great human good. And
we should knock ourselves out to get as many as possible without
compromising death. So I am a bit confused on this.
CHAIRMAN PELLEGRINO: Thank you.
Dr. Meilaender?
PROF. MEILAENDER:I note for Peter that some people have
tried to clone their pets. I don't know about the ventilators yet
but you just might keep that in mind.
I find myself in the, for me, unusual position of wanting
to issue a caution with respect to language that is often thought of as
religious. That is to say the soul language though, of course, it
doesn't have to be necessarily religious language. It can be sort
of a purely philosophical language.
But I was sitting here when Ben was talking, thinking about
the danger of this language is that people are going to connect soul
language to certain kinds of higher brain capacities. And think that
the loss of the soul is the same as that.
And then sure enough, five minutes later, Peter talked
about a functioning body from which the soul or the brain is gone. I
think that is a mistake. And I don't think that is the way the
soul language needs to be understood. I just want to point out that it
is a danger.
From my perspective, any proper understanding of soul
language is such that if you got a living human body, there is a soul
there, you see, and you actually don't know that the soul is gone
unless and until you don't have a living human body by whatever
criteria you determine that any longer. If it is animated, the anima
is there.
And I thought it might be useful — I mean I don't know
but just a certain kind of illustration — we tend commonly, those of
us who use soul body language at all, and, of course, there are people
who don't, but those who do tend commonly to think of it sort of
like these two things temporarily join together, which then could be
separated and maybe could be reunited or something like that. Sort of
like a rider mounted on a horse.
And that image won't work because it is as if you could
shoot the horse out from under and leave the rider perfectly
unscathed. Or as if you could kill the rider and just have an animal
left or something like that. Whatever exactly this language means, you
have to think of it more like a centaur. You see the union of man and
horse in such a way that you couldn't just kind of shoot the horse
out from under and everything stays the same.
And if you think of it that way, then we will have less
inclination to connect soul language with those peculiarly higher
capacities of the brain. And I don't think anybody ever really
made that connection prior to about the 18th century, in fact.
But I obviously don't really have a problem with the
language. I just think that it can lead in some directions that, from
my perspective, are unfortunate, actually, here. And so we need to be
cautious about how we use it. And careful.
CHAIRMAN PELLEGRINO: Thank you very much.
Dr. Bloom?
DR. BLOOM: Well, perhaps I am the only one who feels
this way but I do not accept the scientific arguments put forward that
challenge the concept of brain death. It seems to me that the
definition on page 18 of the text defined by Dr. Pallis holds. And
until I hear an argument to the contrary, I see no reason to have this
loss of confidence in the brain death definition.
PROF. MEILAENDER:Can you say a little —
CHAIRMAN PELLEGRINO: Gil?
PROF. MEILAENDER:— more about what you see as
the defects of the challenge rather than just affirming the Pallis
—
DR. BLOOM: Well, the fact that the heart will continue
to beat without the brain does not, in itself, constitute life as we
know it. The fact that the guts will continue to digest food and that
the liver will continue to metabolize carbohydrates and fat is not life
as we know it. It is cellular metabolism. But it is not human life.
The fact that the body cannot respond to the lack of oxygen
and initiate breathing combined with the loss of consciousness
represents to me a dead person.
The last argument that Dr. Shewmon made, which is that
vasopressin, an antidiuretic hormone, can be secreted is not much
different than the body reacting to hypoxia to try to initiate
breathing. When the salt and water balance of the body are effected, a
nonconscious hormonal reflex causes vasopressin to be secreted. That
does not represent human life.
So I did not find Dr. Shewmon's word game with a variety of
concepts of integration of the whole to be a convincing argument
against this very simple and straightforward definition: the lack
of consciousness combined with the lack of ability to generate spontaneous
breathing is death.
DR. FOSTER: Along the same lines just quickly, I mean
we take cells out of bodies all the time that metabolize carbohydrates
and fats and make lactic acid. They do every single thing that the
arguments were used against this. They just don't hold I don't
think. I'm just agreeing with Floyd's assessment here.
CHAIRMAN PELLEGRINO: Dr. Schaub?
PROF. SCHAUB: Ben Carson gave me my opening by saying
that in the past death was more clear cut. I have two passages
from long ago that I want to throw into the mix. One is from George
Washington. George Washington, on his deathbed, gave the following
last orders: "Have me decently buried and do not let my body
be put into the vault in less than three days after I am dead.
Do you understand me?"
Apparently he feared being buried alive. So it has long been
understood that life can imitate death.
Edgar Allen Poe, the other passage that I want to toss in,
is the master of telling about the horrors of being buried alive. I
just have one paragraph from a story called "The Premature
Burial."
To be buried while alive is beyond question the most
horrific of these extremes which has ever fallen to the lot of near
mortality. That it has frequently, very frequently so fallen will
scarcely be denied by those who think the boundaries which divide life
from death are, at best, shadowy and vague. Who shall say where the
one ends and where the other begins? We know that there are diseases
in which occur total cessations of all the apparent functions of
vitality and yet in which these cessations are merely suspensions,
properly so called. They are only temporary pauses in the
incomprehensible mechanism. A certain period elapses and some unseen
mysterious principle again sets in motion the magic pinions and the
wizard wheels. The silver cord was not forever loosed nor the golden
bowl irreparably broken. But where meantime was the soul?
So, I mean it seems that in the past, it was a matter of
waiting long enough to be sure that the vital principle was
extinguished and not just in abeyance. But now the push is entirely in
the other direction. We want to speed up the determination of death —
speed it up as much as we can.
And it does seem to me that there is something unseemly
about that push to speed up the determination of death. And so I guess
I would be in the favor of erring on the side of life and pursue rather
conservative policies, certainly sticking to the dead donor rule and
setting very stringent criteria for death.
The Shewmon article, one thing that it points out other
than this issue that Dr. Bloom just raised, but the Shewmon article
points out that the current criteria don't fully match the whole
brain death definition. And so it seems that there might be work in
sort of refining the criteria.
I did also just have a question about the comparison
between the U.K. standard and the United States standard. And I take
it, Floyd, that you were embracing the U.K. standard.
Can somebody explain a little more clearly to me what the
differences would be? I mean it did seem as if the U.K. standard would
somewhat expand the class of people classified as dead in comparison to
the United States standard. Is that correct?
CHAIRMAN PELLEGRINO: Alan, would you clarify that issue
for us?
MR. RUBENSTEIN: I'll do my best.
The clinical bedside tests that are performed to determine
if a person is brain dead test brainstem functions. So it tests
brainstem reflexes, it tests for apnea, inability to breathe on their
own when the ventilator is removed. There is also other tests which
are not called clinical tests: lab tests or something else which
involve EEGs or testing for intracranial blood flow.
Those tests aren't done in Great Britain. If a person
meets the clinical tests for brain death, then that is sufficient. So
theoretically, there could be someone who, in the United States, is not
classified as brain dead because something comes up on the EEG or
something comes up in one of these other tests that shows that although
from the brainstem perspective, they are completely gone, from the
whole brain perspective, they are not completely gone.
My impression from the literature and someone should correct me
is that it is very rare that someone who would be considered dead
in the U.K. — in the class of brain dead — would not
be considered so in the United States.
There was a significant stir in the literature when it was
discovered that there is still this ADH secretion going on in some
brain dead patients which is a secretion of a hormone which pretty
conclusively shows there is something going on in the brain although
the person has passed all of the tests for brainstem death.
So, again, how to interpret what that means is a little bit
unclear. But for the British standard, and this is actually said by
Christopher Pallis in papers, he said well, that is just not a problem
for us. So there might be a little bit of continued activity in the
brain demonstrated here but we were only ever concerned about the
brainstem anyway.
So it kind of shows you where there is conceptually, at
least, a difference.
CHAIRMAN PELLEGRINO: Thank you, Alan.
Dr. Schaub, did you want to comment? Dr. Hurlbut?
DR. HURLBUT: It seems to me that if we do enter this
realm of discourse on the definition of death, we are dealing with a
lot more here than just the questions associated with organ donation.
We are dealing with a realm where a lot of strange and perhaps even
ghoulish concerns may arise. And yet a lot of positive possibilities
that would allow good advance of science.
And I am thinking here of the — it's not a large-scale
phenomenon but there are some new inquiries into physiological
functioning on otherwise dead or dying bodies. And there would be
scientific value in doing some physiological studies on a
respirator-sustained corpse, if you will.
I think also there are going to eventually be some very
strange questions about the borders of organ versus organism as we
start to develop technologies to produce organs and maybe even organ
systems apart from the body as a whole. Who knows whether these will
turn out to be feasible but my guess is that they will.
When you talk with people who are working with — in stem
cell research, they speak optimistically about being able to identify
those combinations of cells independently produced when put together
spontaneously generate portions of organs and perhaps even whole
organs.
That seems to me to be a physical phenomenon that we could
eventually study and master. And, by the way, that has nothing to do
with having to sacrifice embryos to get those cells. You could perhaps
get that whole scientific progress in place without ever going through
an embryo.
So the point is that eventually we may have some very strange questions
coming that cause us to want to know what is the definition of life,
organism and human organism. And we would do a service to the society
to initiate the discussion on this because these are going to be
very difficult issues.
It is clear that having used a very productive heuristic of
a body-mind dualism, that now it is starting to cost us. And it is
time to reexamine the meaning of embodiment. And if we don't do it
now, then it will eventually fall to others.
But it is such an advantage to doing things before you are
under the pressure of the politics and the pressure of the pragmatic
possibilities. There is a bit of theoretical distance that we have an
advantage of from the present. So that is the first thing.
Oh, by the way, another interesting border and boundary of humanity
question that would be somewhat at least tangentially relevant and
implicitly covered in this kind of discussion would be the question
of human-animal chimeras which, I'm going to say tomorrow, I
think is a subject we ought to address that Diana has done some
very good thinking on that.
But the single thing I think we could gain by entering this
inquiry, and this is a little bit broader than just what we are talking
about right now, but it is clear that there is the fundamental question
of the protection of human life.
But it would be a helpful contribution to our culture if we
would clarify and define the secondary moral and prudential concerns
associated with it. And draw a distinction between the absolute
protection of life and the violation of human dignity and the
sensitivity of human process.
I'm thinking here of the more — the issues of
semiotics, that kind of symbolic significance of the body and the
personal feelings that attend. We obviously have natural moral
sentiments that are shorthand for large questions. They function for
us but they are not exactly scientific categories.
I guess what I'm really trying to say here just to sum it up
is that in trying so hard to stay away from the word "soul,"
which we have done diligently in this Council, reflecting on how
we avoided that terms when we were talking about cloning took some
dancing but we did it, but trying to avoid the word soul, we have
lost the functional shorthand for what a lot of people — what
relates to a lot of people's concepts of what is going on in
these realms.
If we could in a gingerly sort of way reenter into that
category without any disposition of prejudice toward any one
formulation, we might really come to some valuable insight and help our
society reformulate what was meant by soul but in a more pluralistic
and more material physiologically-related description.
In other words, I think we might be offered the unique opportunity
to clarify the meaning of soul and psyche in modern terms would
be a really wonderful thing to do because there is a lot that is
being lost by not using the word soul.
CHAIRMAN PELLEGRINO: Thank you, Bill.
Dr. Lawler?
PROF. LAWLER: That would be a big job for us but a good
job perhaps.
I raised my hand a while ago to say I agreed with Gil that
I don't — you know you can't talk about the human soul in the
absence of a human body as if the soul and the body weren't a
whole. Now you can call the whole the soul because the danger in
talking about the soul as if it were something different from the body
is you might end up distinguishing between human life and life.
So human life is worth legal protection but not life. And
so you can conceive of the possibility of something that is alive, a
being who is alive but is not human. And the studies before us present
us with this possibility. I mean a real possibility of this being who
is somehow still an organism but without a brain. So is this a human
life? A being that is somehow still an organism but utterly without a
brain?
But I think it is dangerous, horrible to distinguish between human
life and life for reasons we have all talked about in different
ways. So — right, so I would be — if we can show that
this being — and I agree with some of the doubts that have
been expressed. I'm very unsettled on this. I've just
learned about these studies lately.
That this being who has a beating heart and is in some way
an integrated organism but really doesn't have a brain, if we can
show this being is alive, I would agree with Gil. This being has a
soul and we should call it a human being. And so worthy of legal
protection. But I think the jury is out on this for now.
Now Diana is right that we do rush to judgment now when it comes
to death. And there is something utterly unseemly about this.
So you might want to say that the only way to avoid this is to completely
detach our understanding of life and death from any consideration
concerning the donation of organs, the acquisition of organs.
Now the problem with this is that would diminish the number
of organs we get or acquire that will benefit others. So there is a
kind of understandable pragmatism here. We don't want to do the
wrong thing — that is take organs from living human beings.
On the other hand, we want to get as many organs as we can. And
so we are kind of stuck with this rush to judgment with respect
to death. We need to know exactly what death is more than ever
because we can't afford to wait around if we regard acquiring
organs as a human good. So we need to know what death is more precisely
than ever now. And because of the ventilator, we are less sure
than ever what death is now.
So — and I'm scared if Bill is right and the line between
life and non-life is going to get fuzzy on us. Because, in fact,
life is already mysterious enough. We really don't understand
where animation comes from or how something suddenly gets animated.
Why in a lifeless universe did life emerge? Now we don't understand
that and that causes problems.
But if it turns out there is categories that aren't
clearly in life or non-life, then our whole moral system explodes on us
sort of.
CHAIRMAN PELLEGRINO: Thank you very much, Peter.
Dr. Carson?
DR. CARSON: You know the surgeon in me says, you know,
if somebody is irreversibly injured, they are not going to come back to
a functional state and if somebody else who could use their organs, we
should take the organ and give it to the one that can stop going
through all this silliness.
But I recognize that I'm not speaking as a surgeon
today. I'm speaking as a member of the President's Council on
Bioethics. So, you know, let's go back and hash this out a little
bit, you know, in terms of living versus not living, being human versus
being not human.
You know we all remember back in high school in our biology classes
that we took the heart out of a frog and put it in a vat of lactated
Ringer's [solution] and it continued to beat. Does that mean that
frog is still alive? Well, maybe you say it takes more than a heart
so, you know, let's connect the liver and the intestines with
it. Maybe then it is alive.
I mean where do you stop, you know, when you start dealing
with that kind of an argument. And, you know, I have to agree with Dr.
Bloom. You know the brain really is the thing that distinguishes from
a mass of cells. It is the thing that makes us into human beings, that
makes each person.
And getting back to what Gil was saying, it is also what
makes an animal into, you know, an individual animal. And if you take
a dog's brain out, you have got the same situation. A mass of
cells, a mass of organs, but, you know, does it matter if they are
inside the cavity of a body versus in a petri dish?
CHAIRMAN PELLEGRINO: Dr. Meilaender?
PROF. MEILAENDER:I am coming back to Floyd's comment
just to note one thing.
I would be very happy — and his comment seconded by Dan
actually — I would be very happy if it turned out that we thought we
could come up with a good defense of something like the current
understanding of not so much definition of death but criteria for
determining death. I mean that would solve a lot of problems.
My only concern back from my opening comments is that we
not, as it were, just pretend that there hadn't been a serious
challenge mounted to it. Now you didn't seem to want to take it
seriously and maybe if I knew as much as you I wouldn't either, I
don't know. But I do want to try to take the challenge seriously.
One way to take a challenge seriously, of course, is to reject
it finally. And that would be possible. The one thing I wanted
to notice in — if, you know, we think this through and turn
in that direction is that there is something I'm not clear on
with this British definition which does have the sort of admiral
quality of sort of simplicity to it, the loss of the capacity for
consciousness and the loss of the capacity to breathe.
I just would notice that that formulation from the paper is
a little different — a little different from the way Leon reformulated
it in the comments he left with us because he put it in terms of the
loss of the capacity for respiration or spontaneous respiration and
permanent cessation of wakefulness.
Wakefulness and consciousness are not precisely the same.
Now it may be that given that you have got the coordinating conjunction
combining that with spontaneous respiration, it may be that practically
speaking they would come to the same thing. But that is, I think,
something that would have to be sorted through in thinking about this.
I do not think that a capacity for consciousness and a
capacity for wakefulness come to the same thing since, as I understand
it, and it is subject to being corrected by more knowledgeable people,
the PVS patient, for instance, is a classic case of someone who has
permanently lost all awareness but has periods of wakefulness.
So one would need a certain kind of just clarity about how
we formulated that. And I don't know, it may not be accidental.
But Leon's formulation was a little different. And maybe it is
entirely accidental. I don't know.
CHAIRMAN PELLEGRINO: Thank you, Gil.
Dr. Bloom?
DR. BLOOM: Well, the reason I prefer the Pallis
definition to Leon's is that I could imagine a state like REM sleep
in which one would have conscious awareness of past memories but could
not wake up. But loss of consciousness requires being awake.
Consciousness requires being awake. I misspoke.
PARTICIPANT: I was trying to figure that one out.
DR. BLOOM: Yes, sorry.
PARTICIPANT: You had us for a minute there.
DR. BLOOM: So to me, the original Pallis definition
seems to me to be more coherent and consistent with what a physician
would want to find to declare that person dead: loss of consciousness
combined with the inability to generate spontaneous respiration.
CHAIRMAN PELLEGRINO: Thank you.
Dr. Schneider? Then Dr. Foster.
PROF. SCHNEIDER: I just have a few thoughts that I feel
obliged to reveal to the world.
The first is that we have been talking as though almost
everything about the definition of death is ultimately being driven by
our desire to transplant more organs. And I certainly agree that
historically that has been one of the things that has moved changes in
the definition along.
But I think that the other thing that has been very
powerful that way has to do with something that is a much more
frequently occurring kind of problem. I mean very few organs are
transplanted but people worry about when someone is dead all the time.
Millions and millions of people die with concerns about at
what point the relatives and the physicians and possibly the patient
decide that human life in some meaningful sense is no longer present.
And I think that an awful lot of what drives the ordinary
person's feelings about the definition of death have to do with a
sense of the absence of the things that were important about the person
at some physiological point.
And that leads me to my second kind of concern which is
that I think that a large part of the problems that we saw, for
example, around the Schiavo case grew out of the fact that
understandings about when we are going to treat people as dead are very
different in professional communities and in the rest of society.
We have allowed these changes in understandings to take
place differentially in a way that leaves the ordinary person
completely aghast when they discover the way that professionals,
lawyers, ethicists, doctors think about these things.
And I think that there is a significant social cost to pay
when you have a disjuncture between professional thought and the
thought of the human beings who are actually involved in these cases.
And that leads me to my third point which is a point I make
as a lawyer. Whatever you do, it is very important to produce
definitions that people can understand. Even the brain death
definition has not been understood by substantial proportions of the
medical community.
There was an interesting study by Youngner and a colleague or two
that suggested that physicians and nurses widely misunderstand what
brain death as ordinarily understood is supposed to be.
So my plea here is that whatever definition one might think
it wise to come up with, it, as a practical matter, has to be a
definition that people can understand and apply in some reasonably
comprehensive, comprehending way.
Thank you.
CHAIRMAN PELLEGRINO: Thank you.
Dr. Foster?
DR. FOSTER: The late Richard Feynman, the great physicist
who won the Nobel prize, had a famous statement which said that
we ought not to tell nature what to do but we ought to listen to
nature. And I just want to make a brief comment teleologically
in support of Ben and Floyd's primacy of the brain.
If the blood pressure falls, then the body does something
very interesting. It stops — it doesn't stop completely but it
shunts blood away from the liver and the kidney in order to preserve it
for the brain. In other words, it will say I will let the kidney die
and I will let the liver die if I can protect the brain.
Along the same lines, in starvation, for example, the liver
stops making many proteins but it doesn't stop albumen because
albumen is what sustains the volume of blood to protect the brain. In
other words, the body teleologically says it will do everything to
protect the brain at the expense of other things, kidneys and so forth,
it will sacrifice them.
So we talk about many times the multi-organ failure. Much
of that is done to protect the brain. I mean if you just listen to
nature without all the philosophical arguments at all, it will tell you
that in all animals and in humans, the prime event teleologically is to
protect the brain.
And so I'm just saying this in simple terms that I
think everybody would understand. If you can't breathe, then you
can't do it. That's brain death. And so I'm not —
And there are many reflexes — I don't want to be
ghoulish but the antidiuretic hormone which is meant to preserve water
it also sustains the blood pressure. So any time the blood pressure
falls, you are going to release antidiuretic hormone automatically.
There are cells that contract in all sorts of ways to do this.
It's nothing funny.
Many times, you might argue, just because people — that
there is a release of stool or urine at the last thing, that's not
because the GI tract or the bladder are still alive, they are just
contracting in terms of a reflex thing.
So I think we ought to listen to nature about what's —
and that is sort of silly to talk about that because everything is
important for life, I mean, but nevertheless in life, the body tries to
sustain the brain above all things.
So I think that the idea of focusing on the brain is a
perfectly scientifically correct way to do — I'm not saying it is
the only thing that counts but nevertheless that is what Feynman would
say: listen to nature and it will tell you what's most important.
CHAIRMAN PELLEGRINO: Thank you, Dr. Foster.
Further comments? Questions? I saw Dr. Lawler and Dr.
Hurlbut.
PROF. LAWLER: Okay, in my confused thinking on this, I
notice that all the M.D.s are in agreement. And so maybe we should
listen to them in addition to nature.
PARTICIPANT: That's always a good idea, listen to us,
right?
PROF. LAWLER: I don't do that when it comes to my
personal health but with respect to these big issues maybe we should.
And, of course, as usual, Dan engaged in this
self-deprecating irony about being philosophical as if it embarrasses
him. But listening to nature is philosophical. So what you were
saying — and I'm saying very tentatively is here is the opinion,
so to speak, of the body. We exist for the brain. And so mainly we
defend the brain.
If the brain ain't there, then we're pointless. We
have no business being around. And so if we look to the teleology of
the body, the body understands itself as mainly a defense mechanism for
the brain. Is that right?
DR. FOSTER: It is very simplistic. But I mean I was
very simplistic, not you. I was very simplistic. But I think that
yes, one should pay attention to what nature tells you. That was
Feynman's argument and that is the argument that I think all three
of us are making here, yes.
CHAIRMAN PELLEGRINO: Dr. Hurlbut?
DR. HURLBUT: Well, this is just a little addition to
what Dan said and continuing with what I said earlier.
I think Leon's distinction between brain death and
death of a human being, there is something good in pursuing that
distinction. And in reading over the working paper and Shewmon's
article, it struck me that Alan Shewmon has a lot of interesting stuff
to say to us. And yet I also had the feeling that if we took it and
thought deeply collectively about it, we might actually be able to come
up with something that preserved Leon's insight of what the death
of the human being actually is.
And I'm not convinced we don't have the increasing
insight into what is a reasonable physiological criteria for making
those distinctions now. I mean we have an increasing understanding of
systems biology and a sensitivity to what relationship of the parts
produces a whole.
And I mean I don't know it is at least worth exploring
whether we might thoughtfully reconsider what defines a human life.
And take on this hard problem. I mean at least we could look to see
whether it was tractable or not.
That seems to be a very worthwhile thing to do. If a body
like ours isn't willing to do that working on the kinds of insights
that Dan just said, then who would do it. And we have a range of
perspectives here that — and also recognize the pragmatic implications
of this both for organ donation and beyond that there is something that
feels very consistent with our mandate as a Council here. This feels
like the kind of issue we were meant to take on by our composition and
original Executive Order what we were supposed to do — deal with these
cutting-edge issues. Well, that says it.
CHAIRMAN PELLEGRINO: Thank you very much.
Dr. Meilaender?
PROF. MEILAENDER:Well, given that our numbers are a
little smaller today and that we may be close to exhausting our
collective wisdom, I wonder — you may not want to but I wonder if you,
as the Chairman, would have anything to say on this.
I would be interested to hear, if you are willing, given,
you know, you have got years of clinical experience, you have watched
the development of this argument over several decades. Are you
interested in commenting on it? What angle would you take on it?
I personally would be interested to hear if you are —
since there is nothing more for you to moderate right now, I would be
interested to hear it.
CHAIRMAN PELLEGRINO: Will somebody ask to speak so I
don't have to?
No, thank you, Gil. I have been following the general
policy of not making many comments because I think the job of the
chairman is to see that everybody else has an opportunity to speak.
And also, I have no claim on any special wisdom. And many years of
clinical experience does not necessarily make me an authority on this
question.
Obviously you have been talking about a question which has
been vexing us as clinicians for a long time. And it is a question
that I think will go on. I doubt that we are going to be able to
arrive at a definition everybody would agree to.
I do think we could perform a very useful function by
laying out the issues in clear form as I think this Council has done in
the past in its previous reports, which I think are exemplary in laying
out the issue.
My own point of view: I am very, very leery of brain death
criteria purely from the side of what are the consequences that may
follow from them. I know the arguments...
I think this and a lot of other questions in bioethics are
extraordinarily difficult because we must act in the presence of
uncertainty. And I think that situation is going to persist for a long
time.
So my own take, if I may say, Gil, is rather to look at the
question as a bedside question, if you will, of how do I act in the
most defensible, morally, ethically defensible way, when I have to make
decisions that involve questions that have a lack of absolutely
certainty.
Those of you who are clinicians know that
that is what we do all the time. Clinical medicine is the science of
probabilities, certainly not of certitudes.
I don't mean to preach here or to dodge the question
but from my own point of view, I would still think in terms of the
very, very old fashioned [criterion of] cessation of respiration and of
circulation. And without trying to defend that at the moment. Just to
respond to your question, Gil.
From the point of view of what the Council ought to do, I
am inclined to agree with Bill Hurlbut that we ought to take a look at
this question. As I said, lay out the issues. We may not be able to,
if I [understand] your discussions, I doubt that we will come to a
consensus in the true sense of that word. But I do think we can add to
the discussion the issues that you have brought up [to claim] the
question if not the answer.
Well, without going on and on, Gil, my own feeling is to
look at this as a clinical question (with all of the philosophical
issues in the background) where we must act in some way and we must
find out how do we can act with the most defensible position from the
ethical point of view.
So, therefore, I think an ethical analysis of the lack of
certitude and the question of how we act without knowing exactly what
the answer is would be important. I have myself, for my own thinking,
come to look more in terms of the fact that there comes a time in the
natural history of any disease when we have to decide that medicine has
nothing more to offer.
.In many of the cases you are talking about, we could
change the circumstances of the decision from the question of "is the
patient dead?" to the question of "are we justified in continuing
treatment?" because I do believe there is a [clinical] principle that
says that if there is nothing to be achieved by what we are doing, we
don't have a moral obligation to do it.
Without going into detail — I have talked to my colleagues
about this — I think there is a way to get around some of these
questions without getting to the ontological question of whether the
patient is alive or dead.
From the ontological point of view, I believe that death
occurs when the soul leaves the body. I take the Aristolelean point
of view on the soul and the unity of body and soul, as some of you
[have already] said. And I don't think we are going to be able to
discern that moment by any test that I know.
So let me just close by saying that I think A., we need to act.
And, therefore, the question of what are the criteria that [constitute]
a morally permissible act at this point given the uncertainties
and the likelihood that those uncertainties are not going to be
resolved.
The second question of perhaps looking at a decision-making process
[in a different way] that doesn't say "is the patient alive
or dead?" But rather says, "are we justified in continuing
treatment or have we not reached that point where ethically one
may say we should allow the natural history of the disease to evolve?"
And is that natural history being impeded by the use of technology
to no end and purpose?
Now there is a lot in that. And I don't mean to
convince you that that is the way to go. But that is the kind of
thinking I'm going through at the moment.
Yes, Peter?
PROF. LAWLER: So I have to add our M.D.s don't exactly
agree after all. But more than that, you point to a problem. The
cases discussed in the paper, in every case, everyone would agree
further treatment is pointless. You can remove the ventilator.
In no case do we have anything controversial there.
What is controversial is sometimes you want to keep the
person on the ventilator, not for the person's own good but to
facilitate the acquisition of the organs. Do you think this is morally
defensible?
CHAIRMAN PELLEGRINO: I think that if you have arrived at
that point where you can say that we have reached the limits of
anything that medicine can contribute — that is to say in the way of
good or benefit to the patient — and where the burdens may overcome
the good [according to] the principle of disproportion, under those
circumstances you could say well, we are justified in removing the
respirator.
Now having made that decision, I don't — I think it is
defensible to say we can now have a controlled dying process. That we
can remove the respirator in such a way that with all the things that
go with it, we can remove the organs [after the heart and breathing
stop]. And you haven't had to ask the question is the patient
dead? You've decided you are going to allow the natural history to
emerge.
I think that is another way of looking at it. And
personally when I'm doing ethics consults and so on, I lean in that
direction. I think that is defensible.
DR. GÓMEZ-LOBO: This isn't a question what do we do
by ignorance, of course, but isn't it the case that in order even
to deliberate about removing say extraordinary means, you are asserting
that the patient is, indeed, alive?
In other words, I side with Leon, I think, on this one that
the question about end-of-life treatment is a different question
conceptually speaking from the question of whether the patient is alive
or no longer alive.
CHAIRMAN PELLEGRINO: Well, I think you are right about
that. It is a different question. But given that we cannot answer
that question in the ontological sense (to speak philosophically
about this), and we have a practical decision to be made, and we
are in the realm of the bedside, clinical decision-making process,
given those things, it seems to me that the approach that I have
suggested doesn't have to answer the question "is he alive
or dead?"
If you are saying "is he still alive?" I'd say yes,
that is right. But let's take a situation that Dr. Carson faces,
I suspect, quite a few times. A young person riding a motorcycle,
the death instrument, and hits a concrete abutment. Now they keep
him alive long enough to come to your attentioN
And then...someone... would say, "Well, there is so much damage
here to the brain physiologically and pathologically and so on,
to the best of my clinical judgment — and we are human and
our clinical judgment is just that — we are assuming you are
well qualified — this patient cannot recover."
And anything we do for this patient will be — I'm
going to use a word that is very, very much debated — futile.
I'll define that if you want but, again, I'm not here to
[defend this point].
Under those circumstances, that young man is living but
[the clinical judgment is that] there is no future for him. And in
[the physician's] best judgment, that patient will die [no matter what
we do medically] within a period of five or six hours let's say.
And under those circumstances, we could discontinue
treatment as being of no [medical] value to the patient. Being
perhaps, for many, many reasons, not beneficial [but burdensome
disproportionately]. They are two different things — effectiveness
and beneficial. And then allow that patient to die.
And in the process, begin to prepare him for the taking of
his organs. That is the question. . [H]e is alive, yes. But we allow
people to die [to permit] the natural history of that disease to
express itself.
DR. GÓMEZ-LOBO: But Dr. Carson would not extract organs
before the patient —
CHAIRMAN PELLEGRINO: I'm sorry?
DR. GÓMEZ-LOBO: Dr. Carson would not extract organs
before the patient has died according to your criteria which are
basically cardio-respiratory criteria, right?
CHAIRMAN PELLEGRINO: Oh, yes. Well, under those
circumstances — I didn't go into all the details of what I would
do under those circumstances. You decide — you've got everything
ready. You've decided that this is the time to remove the
respirator and the other support mechanisms [not to remove organs, but
because the patient is dead].
Follow the electrocardiogram for three to five minutes. If
you get no sign of electrical activity, then you can say — you can say
he is dead. [H]e is at the point where you can take the organs.
I think that is why I fall back on cardio [pulmonary
criteria for death to be pronounced].
DR. CARSON: I was
going to say what actually is done in that case because it does come
up. And what actually is done is we determine whether, in fact, the
patient has any cerebral blood flow. You know we would do an EEG. We
would do an apnea test. And we'd talk to the family.
And if the family says, you know, they are willing to
donate organs, that the team is called — the procurement team is
called. They take the patient to the operating room. They procure the
organs. And that is standardly done.
CHAIRMAN PELLEGRINO: But you have a set of criteria that
you follow, right?
DR. CARSON: Yes. They have to meet the criteria.
CHAIRMAN PELLEGRINO: I didn't go through all the
criteria. What is happening here is why I have —
PROF. SCHNEIDER: Oh, I was just going to say that I'm
the local prosecutor and I'm sitting here around here with my
definitions of death and I'm asking whether when you start
extracting the organs after two minutes or five minutes or four
minutes, whether you are actually committing homicide or not. And I
have a good case to make that you are as long as you are using your —
as you described them — old-fashioned criteria.
CHAIRMAN PELLEGRINO: Well, the heart, of course, would
have stopped by this point. You have — the electrocardiogram is
flat. You've got no evidence of any other criteria you are talking
about. So I wouldn't be committing homicide.
PROF. SCHNEIDER: I need to know that they have irretrievably
or irreversibly stopped. I mean this obviously comes up with the
Pittsburgh Protocol.
CHAIRMAN PELLEGRINO: Well, I think again the clinicians
here can argue with me but I think the criteria are clear that if you
do not get electrocardiographic evidence of activity — electrical
activity — for three to five minutes, and five minutes is the upward
limit [after the heart and breathing stop], the possibility of
returning is — and again we haven't got certitude — the
possibility of returning is so low that one may proceed.
And, therefore, I would plead, sir, Prosecutor, I'm not
guilty of homicide.
PROF. SCHNEIDER: It certainly makes a big difference how
many minutes you are going to use here. And the minutes that are
actually used in real fact can be smaller than the number of minutes
you are suggesting, raising these problems of definition in a legal
sense that become quite difficult for the poor prosecutor to resolve as
well as the poor doctor to anticipate.
CHAIRMAN PELLEGRINO: You know, I think you are absolutely
right. But I think it will show in three to five minutes.
The other thing is I guess I've had a little personal
work in this but for some years I did electrocardiograms on dying
patients to see what did happen — whether they did return. I'm
not saying that my data should solve the problem but others have done
it of course.
But many, many years ago, that concerned me. And three to
five minutes is a pretty good period of time of no activity — complete
lack of electrical activity. [Following cessation of cardiac and
pulmonary activity.] Anyways, this is only a hypothesis.
The government representative has just pointed out to me
that I've talked too long. And we are going to extend our break.
I promise to be silent from here on in.
(Whereupon, the foregoing matter went off the record at
10:39 a.m. and went back on the record at 11:02 a.m.)
****
SESSION 2: LIVING ORGAN DONATION: OUTCOMES AND ETHICS
CHAIRMAN PELLEGRINO: Thank you for reassembling so
promptly, keeping us on schedule.
Before we take up the next item, I want to remind you,
Council members, that you have two statements from the transplant
community as background to refer to, one having a consensus statement
on the Amsterdam forum on the care of the live kidney donor and then an
ethics statement of the Vancouver forum on the liver, lung, liver,
pancreas and intestine donor. They're brief and they're to the
point and I think they'd be very relevant to your discussions and
contemplations of the issue.
Our next item is the discussion of the question of living
organ donation, the outcomes and the ethics, referring to some of the
data that now exists on the practice of living donors.
In this case, as in previous ones, a staff summarization of
where we are has been presented and distributed to the Council members
in advance for their consideration and our procedure will be as before,
I will ask Council Member Dr. Robert George to open up the discussion
and then we will open up the rest of the discussion to the Council
members.
Robby?
PROF. GEORGE: Thank you very much, Ed, and let me begin
with a special word of thanks to you and to Dan Davis for accommodating
my need to have the schedule shifted around this morning in
anticipation of being held against my will for 45 minutes or an hour in
some place like New Carrollton which, in fact, happened. I asked Ed
and Dan if it would be possible to switch the first two sessions and
they were very generous and accommodating that, so thank you.
Thanks, too, to Ginger for a wonderfully clear paper where
in brief compass she not only gave us the facts, but laid the ethical
issues out for us.
Well, let me begin by introducing something very familiar
to all Americans, something called the general libertarian position.
And that is the position that as long as there is no coercion or
deception, a potential donor should be able to donate any organ to
anyone and even make nondirected donations as he chooses. This would
include choices to donate organs such as the heart, where the donation
would result in the donor's death. It would also include the right
to sell one's organs.
A small, but not insignificant number of Americans hold or
are inclined toward the general libertarian position and even people
who reject it see its attractiveness and often have difficulty
explaining why they reject it, at least judging from my discussions
with students in class, they have difficulty seeing or explaining why
they reject it.
Some accept the premise or at least purport to accept it
that people "have a right to control their own bodies." Or
"have a right to do as they please with their bodies so long as
they do not harm others." But they nevertheless worry that
accepting the libertarian principle, as the ground of public policy in
this area and others, for example, think of the question of regulation
of hallucinogenic and other recreational drugs or the question of
prostitution, would be a mistake because of the practical difficulties
with preventing coercion and deception.
What I'm suggesting here is that a lot of people who think
that the basic premise is sound, that people should be able to do
with their bodies whatever they please, so long as there's no
coercion or deception, nevertheless worry that we can't eliminate
or even significantly restrict coercion and deception if the general
libertarian position would be used as a basis for public policy.
Indeed, as they note, there are difficulties even in
defining coercion and deception and in saying what is to account as
coercion or deception. In the case of coercion, what is to account as
psychological pressure? In the case of deception, what is to account
as disclosure of relevant information?
Now, of course, there are others who reject the moral
premise of the general libertarian position. They recognize a
legitimate realm of freedom or autonomy in matters concerning the body,
including centrally-made decisions about health care and even declining
treatments. But they do not have a view, according to which legitimate
exercises of rights to choose are instanciations of a broader, more
general or abstract right to control one's own body or to do as one
pleases so long as there is no harm to others. They don't accept
the premise of the general libertarian position.
In rejecting the concept of the body as a form of property,
belonging to the person whose body it is, so called self-ownership,
they do not embrace the view that the body is the property of the state
or society or in many cases even of God, rather, they hold an
understanding of the body as an aspect of the personal reality of the
human being such that it is not properly regarded as property at all or
the property of anyone including oneself.
For people who take this position, and I take it to be
Leon's position, it's certainly own my position, the
fundamental concern about live organ donation is a concern to avoid a
social sliding into the commodification of the body and of bodily
organs, whether or not there is an exchange of money involved.
The question for people like Leon and me is then how to justify
living organ donation in cases where it strikes us as plainly
justifiable and even laudable, in view of the fact that the donor's
health is always impaired at least temporarily in the process of
donating an organ. I take that from Ginger's paper.
Having in mind the general principle of medical ethics that, as Leon
puts it, "a physician should not violate the bodily wholeness
of a patient for someone else's benefit." Now I agree
with Leon that the attempt and I'll quote him again, "to
get around that wise constraint on physicianly power by invoking
general beneficence and the moral, psychic and spiritual well-being
of the donor seems a large stretch."
I agree with Leon that we do not want physicians making
decisions to remove healthy organs based on the physician's
assessments of whether the act of organ donation will serve the moral
and spiritual well-being of the perspective donor in ways that
compensate for the damage that will be done to the donor's physical
health in the operation to remove the organ for donation.
But then where does that leave us? Perhaps, perhaps we are
left with Leon's somewhat startling conclusion, "I would much
prefer to say that the operating on live donors is an out and out
violation of the traditional medical ethic, yet then argue that it is
humanly justifiable in some, but not all, cases, especially spousal
donation and parent-to-child donation".
Now this is certainly not a conclusion I like. Nor I
gather is Leon himself comfortable with it. Before embracing it, I
would want to consider as carefully as possible justifications for
living organ donation that conceive the surgeon and those assisting him
as serving the common good of the donor and recipient as friends. And
here I am using the term in its richer, Aristotelian sense. So in this
sense, even parent and child are friends in the relevant sense.
Spouses are friends in the relevant sense.
But without the reduction of the benefit to the donor to
the status of some sort of psychic satisfaction or even moral or
spiritual betterment. I do want to resist what Leon wants to resist in
that area.
Now perhaps no such justification can be made to work, and
we are left with Leon's conclusion. But I wouldn't want to say
that before hearing from Gill and Alfonso and Diana and Peter. I'm
singling them out as the Council colleagues that I know have thought
about this question, but my other Council colleagues, too.
Thank you, Ed.
PROF. SCHNEIDER: Since somebody needs to start us off, I
would be happy to try to do so. And I have tried to think about this
since our last meeting. I found myself somewhat at sea because I
recognized so little of the arguments that were being made.
Let me try, as briefly as possible, to tell you some of the
ways in which I approached this from I think quite a different point of
view. Let me first confess any conflicts of interest that I have and
tell you what my experience is that illuminates what I'm saying.
I am the relative of a recipient of two transplants, and I have done
a very great deal of my research some years ago amidst dialysis
patients who were of course themselves primarily anxious to receive
transplants and many of whom had received transplants. I spent
enough time amongst them that I became good friends with a number
of them. I hope they would think so too. It is their lives and
experiences that animate what I am going to say.
The first thing is I guess while I admire all of the papers
that I've read emanating from the Council for their intelligence
and their scholarly achievement, if I were writing them I would have
written them in a very different sort of way.
First, I find an absence of a really passionate sense of
the good that transplants can do. There is, of course, an
acknowledgement that transplants may improve health. It's really a
lot more than that. First of all, of course, for many kinds of
transplants, it's not a question of improving the recipient's
health. It's a question of improving — of making possible the
recipient's continued life.
Even with kidney transplants where life itself isn't at issue, the
difference between being on dialysis and having an actually functioning
kidney is huge. People who are on dialysis actually report levels
of happiness that are not all that distant from those who are ordinarily
healthy people. When they receive a transplant, they report that
their lives have been transformed, that they had lost track of what
it really means to be healthy, and they glow with the satisfactions
of discovering what health can be like.
Similarly, I think that I would have been somewhat less
ambitiously concerned with detailing the disadvantages of donation from
the donor's point of view. For example, the questions about the
risks to the donor are questions at least for the kidney transplant
that have been thought about for a long time and it's not a
question where you can ever say that you have fully been able to
establish all of the possible risks, but the suggestion that there are
some long-range risks that are so ominous that they need to be taken
very, very seriously strikes me as being overdrawn.
There is even some interesting literature from Sweden, I
think, that suggests that the mortality rates of donors are about a
third of those of the population and that is if you ask at a particular
point in time after the donation whether the donor is still alive, the
donor is much more likely to be alive than the average citizen,
similarly situated citizen would be. And of course, that's in
substantial part because donors are picked rather carefully.
But one of the standard suggestions is that donation is
about as risky as extending your commute by a certain number of miles
every day. In other words, it's within the range of risk that
people take all the time without ever thinking about having done so.
More to the point, what I think we don't hear very much
about is other kinds of effects that the donation has in other parts of
the motivation that people have for donation. And one of the things
that has puzzled me the most is what I would describe as something
almost approaching, certainly is a very stringent level of skepticism
about altruism and a kind of suggestion that it's hard to
understand people who are behaving altruistically by donating organs.
The response that you get from donors when you ask them whether they
would do it again is somewhere ordinarily in the 90s, 90 percent
of the people say they would be happy to do it again. It's
very hard in social science literature to find rates of response
in the 90s for almost anything, much less something as dramatic
as giving an organ.
In fact, what a substantial number of donors say is that they have
never done anything in their lives that is as gratifying and important
to them as having donated the organ. And some of the studies suggest
that donors turn out on average to be happier people, possibly because
of the donation and the satisfaction that people get from having
done good in the world.
Similarly, there is an emphasis on the problem of coercion, whether donors
are somehow being coerced. Well, to some extent I have to say leaving
aside questions of what coercion might mean, a certain amount of
familial pressure does not seem to me to be entirely out of place
in these circumstances, and I'm prepared to live with a certain
amount of what you might call coercion.
In any event, the attempts to ferret out coercion have not
been very successful and here, I'm relying on the most extensive
study of this which is the Simmons study which is a book on — which
tries to investigate the problems that may arise with donors of inter
vivos kidneys.
The next set of questions where I find myself a little at
sea have to do with the — I guess it's the social consequences of
a system in which organ donation is possible. Some of that is put in
terms of a fear of commodification. Some of it is put in terms of the
moral and I guess cultural and psychological importance of embodiment.
I've struggled hard to understand these arguments. I
went back and I read Leon's arguments in the other papers. Leon
says that his arguments rest on ideas, on I guess intuitions that are
hard to articulate and if they're hard to articulate, I guess
it's not quite so puzzling that they're also hard to
understand.
I think that they turn on a false perception of the actual
psychology of donation and reception. When people think about giving
organs, I don't think that they think in anything like the terms of
commodification or of some violation of themselves. I think they think
in quite personal and direct terms about the good that they can do in
the world, sometimes for easily identifiable people and sometimes for
people more generally.
So I think that it's important to understand what the
actual psychology of donors is and that psychology is one that does not
focus on these questions of mutilation and does not focus on questions
of transfer of property, but rather focus on the things that human
beings can do for each other.
I guess the last thing I want to say is one more word about
altruism. I would like to see the altruism sort of what I would
describe as the anti-altruism argument described more thoroughly. It
seems to me to start, but also if I'm understanding it correctly,
almost to stop with the suggestion that there are some kinds of
altruism of which we would not approve and the usual example is that
you would not approve of a donation of a heart.
Well, even there, I would like to say that there are all
kinds of sacrifices of life that we do approve of, sacrifices of life
for other people and even for causes. The Christian tradition surely
begins partly "greater love hath no man that he would give up his
life for his neighbor." So, even with the extreme version,
I'm not quite so comfortable that it's a straightforward,
obviously this is impossible, so let's not think about it.
But the kinds of donations that we're talking about, livers
and kidneys and so on, are not intent to be donations in which life
is sacrificed. They're very far from that and then I'm
not sure why — I'm not sure what the argument, as you
might say — against altruism would be? A number of other
questions, but I think I've said enough for now.
CHAIRMAN PELLEGRINO: Thank you very much.
DR. FOSTER:I have a question about just one point. I presume that most
of your conclusions here about living donors have been in family
situations and people who are known to each other, not just — most of
these are probably not anonymous donors along these lines.
Do you think the argument would still hold about the altruism and
so forth if we moved into the next discussion, that is, that this
was commercialized in terms of paying for organs. In other words,
what I'm trying to ask at the beginning is are the conclusions
— I'm perfectly willing to accept the safety things that
you have talked about and never thought about the commute thing
which is interesting, but would the supply in another set of donors
that would be probably quite different from the living donors that
we now experience?
PROF. SCHNEIDER: Obviously, there's a lot less
literature, as you're suggesting, on the nondirected donation. I
don't know of any literature that suggests that those are so
radically different from the other kind.
I do want to say that I think that there is a danger in
thinking about sales. And I see it in a lot of the papers. The
suggestion seems to be that if something is in commerce that it is
being regarded as what a lawyer, an economist would call a fungible
economy. Here is a bushel of wheat. Bushels of wheat are pretty much
— it doesn't matter which grains you're getting, it's just
a bushel of wheat. And that people regard something that they're
selling as something that isn't really very important and isn't
really very valuable except in a very commercial sort of sense.
I just don't think that that's an accurate
description of the way, the many kinds of ways that people can relate
to things that they're buying and selling.
Yesterday, I arrived a little early in town and I went down
to M Street to an antique store that I'm very fond of and there are
some things that I would like to buy that would mean a very great deal
to me and that I would cherish, if I persuade myself that I can do
this. And I think that it's quite possible that if people are in
some sense paid for their donation that the real motive for it will not
be I want the money, but will be much more important and admirable
kinds of reasons.
So until we know at least a lot more about how such
transactions would work, I'm very leery of assuming that they will
work like a wheat market.
CHAIRMAN PELLEGRINO: Dr. Schaub?
PROF. SCHAUB: Robby has given new meaning to Aristotle's
assertion that friends hold all things in common. I'm not sure
that's what Aristotle meant when he said that. I mean it may be
that friends strive to hold all things in common, but in this case, in
the case of organ donation to effectuate their generosity, they need
the cooperation of doctors. And I'm sorry to say that it does seem
to me that live donation is a violation of the medical ethic, so I
think I agree with Leon about this.
And if live donation is a violation of the medical ethic, I don't
see why it's allowable, why the violation is allowable in some
cases, family and friends and not allowable in other cases. I don't
see how to draw the line between family and friends and non-family
gifts.
If the reason that we make this exception is because of the
generosity of the act and generosity is a virtue, it's just as
generous, maybe more generous to give the gift of life to a stranger.
There's certainly more self-interest involved in a family donation
and we see that doctors have not been able to enforce this
distinction. There has been a steady increase in nondirected
donation. Nondirected donation was apparently at one point heartily
resisted, but that resistance has crumbled.
Let me sketch a scenario. We know that all of the major
religions have now approved of live donation. What if a particular
sect were to go further and strongly encourage or maybe even require
live donation? Some denominations have first confession or first
communion. This denomination would have first donation. All men are
brothers. This group of believers love their brothers enough not just
to turn the other cheek, but to offer up the other kidney. Would there
be any reason why transplant surgeons should decline to accept those
offerings?
So I mean it seems that what we've done is we have
allowed this argument from generosity to override the medical ethic and
once we've done that I don't see how we set bounds to
generosity. And I guess I would argue that the natural check on
generosity, if it is in need of a check should be the ethical
principles of the professions. So if you looked at the criminal
justice system, there might be plenty of mothers out there who are
willing to take the murder rap for their guilty son, but prosecutors
are bound by the evidence. They're bound by guilt and innocence.
And in the same way doctors in the past were bound by this medical
ethic that disallowed certain natural generous impulses of people.
CHAIRMAN PELLEGRINO: Thank you.
Dr. Schneider?
PROF. SCHNEIDER: It would help me a lot to know what this
medical ethic is and where it comes from and whether it still makes
sense and if there is such a medical ethic and if it's a medical
ethic that really made sense at one time, did it partly make sense at
that time because organ transplantation wasn't possible and there
was no other reason that physicians would be chopping away at one
person on behalf of another.
Medical ethics have changed an awful lot in the last
century. What principle of medical ethics is it that is so worthy of
preservation and does it still make sense?
CHAIRMAN PELLEGRINO: Does someone want to answer that?
PROF. SCHAUB: Yes. I would — Leon spells it out briefly in
his note on this paper. He goes back to the Hippocratic Oath. He does
not think that the Hippocratic Oath has been superseded and he says
that the principle is that the physician acts always and only for the
benefit of the sick, not the family, the hospital, the larger society
or in the present case, for some other sick person. And he certainly
would not violate the bodily wholeness of the healthy patient for
someone else's benefit.
DR. FOSTER:But I think that — I mean if you go back
to the Hippocratic Oath, it really fundamentally comes out to the
primum non nocere, first do no harm. But that doesn't
hold — we do harm all the time every time we do chemotherapy,
we do harm to a patient in the hope of a greater beneficence there.
So I think that Leon and I think he's talking about not doing
any harm here. I may be wrong, but that's what I think.
PROF. SCHAUB: I think not, actually. I mean it's interesting
at the beginning of this, it's just one paragraph here from
him, but he says that he doesn't believe this principle of "do
no harm" plays such a magisterial role in medical ethics or
medical practice, so he is not hinging his exception on "do
not harm." He's hinging it on what he says is the duty
of the physician to act always and only for the benefit of the sick.
CHAIRMAN PELLEGRINO: I have Dr. Lawler and Dr. Meilaender
and then Dr. Schneider. And then I'd like to make a quick note
about the principle, the first principle of medical ethics.
PROF. LAWLER: I almost want to hear the footnote first.
(Laughter.)
DR. LAWLER: But Diana was very eloquent. On the other
hand, the objection that was raised last time still stands. How then
do we justify cosmetic surgery? How then do we justify nipping and
tucking which doesn't affect — do the patient any good, and in
fact, there's an element of coercion there. People get nipped or
tucked and so forth to be more competitive in the marketplace. So
chemotherapy is to do harm in the hopes that you do good, right?
But plastic surgery, cosmetic surgery, not reconstructive,
but designer cosmetic and plastic surgery is hard to know how we
justify that. And an obvious point would be some of that surgery is no
more dangerous and some of that surgery I think is more dangerous than
being the surgery required to be a kidney donor and obviously the
surgery required to be a kidney donor does someone some good. Nipping
and tucking, strictly speaking, does no one any good except in an
amorphous of aesthetics in a way.
So I agree, at least with the one point that was made, that
maybe the reports are a little bit weak on discussing the good that we
pursue through the donation of kidneys. And maybe they're a little
weak on really outlining the dilemma presented to us by the stage of
science we're at now and it's something like this. Kidney
transplantation is getting better and better. The side effects are
managed, better people are living longer.
Dialysis remains relatively constant and whatever the
studies show about the subjective happiness really a very brutal thing,
a brutal debilitating and really over a long — over some period of
time, a killing thing. And because transplantation is getting better,
dialysis remains constant, more and more people want transplants. The
waiting list is getting longer and preventive medicine, I think Dr.
Hippen was right to explain, although I'm all for better medicine,
although I may not look like it, I really wouldn't change the
fundamental situation of the waiting list getting longer. And so given
the very specific bad situation we're in, maybe we do need to say
more about the good that is a transplant.
And so I actually — I think I agree with Leon that finally
you can't reconcile the ethical injunction of the profession and
with donation. On the other hand, there's something to be said as
Robby said for the freedom people have to do good for their friends,
especially when the good is quite good and the risk isn't, in a