Thursday, December 2, 2004
Session 2: Aging and Care-Giving: Options for Decision-Making
Carl E. Schneider, Chauncey Stillman Professor
for Ethics, Morality, and the Practice of Law, Law School, The University
CHAIRMAN KASS: During the break, Judy Crawford has left
at our place the information regarding dinner for those who are
joining us. "I" Street is one street north, and the way
to get there is to walk to "I" and just head west. We
will meet there at 6:30, just in case I don't remember in the
afternoon session. The little gray cells are not what they used
This second session actually will pick up on themes that were
at the very end of Tom Cole's paper, where he discussed questions
of independence and dependency. It's a great pleasure for me
to again welcome Carl Schneider, who brings to this subject of medical
decisionmaking the perspective not just of an autonomous autonomist,
but a whole career of teaching family law, among other things.
I think that and the fact that he has a kind of muscular way of
thinking and writing, which I very much admire — I appreciated
these papers that you sent us very much.
We've had discussions in here before about the advance directive
as one way to deal with the problem of decisionmaking for those
who are incapable of making decisions for themselves, and Dr. Schneider
has kindly agreed to lay out for us some of the alternatives, the
strengths and weaknesses, and help us advance our own thinking on
So welcome again, and the floor is yours.
PROF. SCHNEIDER: Thank you. It's very kind of you
to have me here, particularly since you don't need me; you have
Rebecca Dresser, who is as important and useful an authority on
this subject as the country has to offer. It's a particular
pleasure for me to be here because I know and esteem so many of
the people on the commission and their work.
Perhaps I should say a word about myself so that you will know
from whence I come. First of all, I am a lawyer, not a doctor,
although I have an appointment at our medical school. This always
confuses people. You know that I'm not a doctor because I do
not have slides for you.
I work in the part of bioethics that you have generally been ignoring,
and that is the part that deals with the ethics of medical decisions
in various forms, the doctrine of informed consent, various sorts
of attempts at advance directives, end-of-life decisionmaking generally,
physician-assisted suicide; those sorts of questions are the kinds
of questions that you seem to be approaching and that I have been
I am not just a lawyer, but an empiricist. I plan to provide
you not so much with information about what I think, which should
not be very interesting to you, but information about how the world
works, which ought to be very interesting to you.
The kind of empirical information I will be drawing on starts
with medical studies. One of the wonderful things about doctors
is they often seem to care how the world actually functions and
they study it. I have tried to read, as systematically as possible,
the medical literature that deals with the ways decisions are actually
made. I've spent a good deal of time doing research among doctors
and patients, observing and interviewing them.
There is another source of data that I have found that's quite
wonderful. In the United States today there is a kind of cultural
taboo against being seriously ill and not writing a book about it.
There are literally hundreds of these books, and many of them
are wonderful. They are wonderful sources of information and they're
wonderful stories about people. I have consistently found both
this reading and my research among patients genuinely inspiring.
I confess that I have been puzzled about how to be most useful
to you. I have assigned readings in the usual way, but I am also
aware from a quarter of a century of teaching that readings are
not always read. So I could just repeat orally what I have said
Mr. Levin's letter to me was Caesarean in its ambitions.
Leon Kass' suggestions to me were equally ambitious although
rather different. I tried to find solace and guidance by reading
your transcripts, and as soon as I finished one transcript, I discovered
it was contradicted by the next transcript, at least insofar as
it was giving me guidance about what you might be trying to attempt.
So what I have decided to try to do was to speak to you in the
sadness of experience. The sadness of experience is that your predecessors
in interests, as we lawyers like to say, other commissions and bioethicists,
have over the last several decades provided the country with a series
of bioethical programs. The doctrine of informed consent is certainly
one, new standards for research ethics, the Patient Self Determination
Act, ideas for encouraging organ donation, and the like.
It is a fair generalization that these bioethical reforms have
consistently failed to achieve the ambitions that their proponents
had for them — consistently failed to achieve those ambitions.
And what I want to do is to talk a little bit about what we know
about how medical decisions are made, how decisions for incompetent
patients are made and might be made, drawing again on the kind of
empirical research that I've been describing, and to try to
talk very briefly then about what lessons you might learn from the
failure of your predecessors.
Everything turns on informed consent. Everything turns on the
ability of competent patients successfully to make contemporaneous
The evidence is that they do not make medical decisions, even
after a full generation now of informed consent, in the way that
the proponents of informed consent, the way that earlier presidential
commissions imagined would happen.
First, doctors do not provide patients with the kind of information
that bioethicists supposed they would. One recent study suggests
that only in 9 percent of the many interactions between doctor and
patient that these researchers observed, only 9 percent of those
cases were patients given the kind of information they would need
to make an intelligent medical decision.
Second, patients do not understand and remember what they are
told. Now why this surprises people is a mystery to me because
so many of us here are teachers, right, and what do we do every
semester? We read the blue books. And what does that tell us?
It tells us that what we said so lucidly and so often was not understood,
that even the work of regurgitating simple facts is not done successfully
by students who are specially picked for their skill at studying
the areas you are teaching.
If that is true, a fortiori, as we lawyers like to say, even more
strongly must it be true that patients, a completely random sample
of the population, will not fully grasp and understand what they
are told and, indeed, they do not.
One of the areas where decisionmaking has been best studied and
where most efforts have been made to promote good decisionmaking
is in the area of the treatment of breast cancer. One study asked
women who were interested primarily, they said, in survival, what
difference there was in the survival rates of the treatments they
were considering, and only 40 percent of these women answered correctly.
This was after they had consulted on average 5.5 sources of information.
Worse, of the women who said that recurrence was their greatest
concern in making the decision, only 20 percent correctly recited
even a rough rate of recurrence.
So not enough information is given. Not enough information is
Third, these problems cannot be solved in the ways that people
have imagined or in any way that I can imagine. These problems
do not exist simply because doctors don't try hard enough and
patients don't try hard enough. No amount of fiddling is going
to change this. Let me give you a few reasons.
Let me say right upfront here that I am not describing one class
of patients in general and myself as a distinction. Many of my
best insights into the foolishness and incomprehension of patients'
decisions come from introspection.
I recently had the gout. I formally consulted two physicians
and was informally volunteered information, including one 20-page
printout from WebMD, from three other physicians. They all had
completely different suggestions to make, all in terms of complete
confidence. I read the 20-page printout. I listened to their advice,
and I still don't know what I should do. I don't even know
whose advice to follow; I respect them all.
PROF. GLENDON: Ask Dan Foster.
PROF. SCHNEIDER: Please don't. Please don't.
I have reached the point of information overload on this question.
CHAIRMAN KASS: It's not a question of information;
this is accurate.
PROF. SCHNEIDER: Ah, I'm glad to hear it.
And this isn't a particularly complicated decision. I mean
people have had gout since, we know, the 18th century. By the way,
it is not caused by drinking too much port.
Where do the problems arise then? Some of the problems arise
from the fact that the literacy of the American population is quite
low. About 45 million people, or roughly one-quarter of the American
population, are functionally illiterate. Another 50 million are
only marginally literate. This means that in one study 42 percent
of the patients could not understand the directions about taking
medicine on an empty stomach when they were written down. Many
patients cannot read the appointment cards that they are given.
Many patients cannot read the cards that tell them how to get to
the next office down the hall.
Many intelligent people just like us have tried for many years
to solve this problem by writing simpler and simpler kinds of instructions.
One recent and sophisticated attempt to do so tried to provide prostate
cancer patients with information about their choices. When this
project was finished, the authors conceded that it could not be
read by half the population.
I have said nothing about the problems of mathematics. These
problems are at least as severe. One of the standard tests of your
numeracy, if that is actually a word, suggests that, asked three
very simple questions, only 16 percent of the population got all
three answers right. Questions like, 10 is what percent of a thousand?
This works itself out in actual medical decisions in disturbing
ways. After being given data about risk reduction from mammography,
from 7 to 33 percent of the women given the information, depending
on how they were given it, estimated the benefit of mammography
But let's suppose all of these problems vanished, that we
have patients with perfect information and perfect understanding.
Will that solve all of the problems that patients have in making
decisions? The answer is no.
And one reason that the answer is no is because what bioethicists
generally assume is that patients come to decisions with a coherent
and well-worked-out set of values relevant to the questions before
them. They do not. Most people have better things to do with their
lives than working out the kinds of values that you might need for
making unanticipated medical decisions or even anticipated ones.
And, in fact, what psychologists who study these things tell us
is that we do not make decisions by consulting our values, reasoning
from them, and then doing what the reasoning tells us. Rather,
our values tend to be explanations that we give for the decisions
we make and not the motives for the decisions themselves. This
is one reason that so often people make very inconsistent kinds
But let's suppose away not just the problem of information,
but also the problem of values. Would we then make good decisions?
The answer is no again. The answer is no again because, in order
to make a good decision about the future, we have to predict how
we're going to react to the possible results that we might reach
in the future.
And there is a very interesting body of research that psychologists
gracelessly call hedonic forecasting. Are people able to predict
what is going to make them happy? Well, now you would think that
nothing would be more important to human beings than thinking about
and being able to predict what's going to make them happy in
the future. People are spectacularly bad at it.
People grossly overestimate, for example, the intensity of emotions
they will feel in the future and, not least, the duration of emotions
that they will feel in the future. This is why, when you've
spent all of that money to buy an Audi, it did not give you $59,000
worth of satisfaction. The satisfaction peaks the moment you drive
out of the showroom and declines very precipitously thereafter,
just like the price. And there's a reason that the price goes
down that fast.
Furthermore, people make these mistakes in ways that are especially
relevant to medical decisions. There are some interesting studies,
for example, of people who recently have become quadriplegic or
paraplegic. They tend to picture for themselves a very, very bleak
future, and, indeed, some people are suicidal, have some suicidal
thoughts on receipt of the information.
That is because, among other things, what they are doing is they
are saying, here is a datum; I am paralyzed. How is that fact going
to make my life worse? What they do not say to themselves is, what
are all of the things in life that I value and that give me satisfaction,
and which of those things will I still be able to do, and how will
my psychological immune system try to create ways in which I can
be happy even given this fact?
And there was a famous study which very roughly goes like this:
You take people who have recently become lottery winners and people
who have recently become paralyzed. The lottery winners' happiness
shoots up precipitously; the paralyzed people's happiness shoots
down precipitously. After a year, they have essentially returned
to what some psychologists think of as their happiness setpoints.
But nobody thinks that that's what he's going to do when
these things happen. People do not predict their own future happiness
Now part of what's going on here is that, in fact, it's
true that experience is in many ways the best teacher, and experience
often counsels us to reconsider our opinions. People these days
routinely recite the mantra that the quality of life is more important
than the quantity of life, and they believe it up to the point at
which the quantity of life actually becomes an issue, at which point
they become remarkably unwilling to give up increments of quantity
in order to get fairly large increments of quality. There are some
very interesting studies of this. People who are very ill think
that their lives are much more satisfactory than observers of their
There's a wonderful book by Wilfrid Sheed on his experience
with depression and cancer and polio, and I think drug addiction.
He said he quickly learned that cancer, even more than polio, has
a disarming way of bargaining downward, beginning with your whole
estate, and then letting you keep the game warden's cottage
or the badminton court, and by the time that it has frightened you
to death and threatened to take away your very existence, you would
be amazed at how little you're willing to settle for.
This is true, but when people are making decisions, this is not
what they imagine themselves thinking. But let's suppose all
of these problems of information and values and psychological insight,
let's suppose those problems all away. Then can patients make
good decisions? And the answer is, you'll be surprised to hear,
still no, and that is because people then have to go through quite
an arduous process of reasoning about which means will best serve
That is something that people seem not to do very well. There
are many reasons for this. One of them is that we all, in thinking
about all kinds of problems, rely on what psychologists like to
call various kinds of heuristics, shortcuts in our thinking that
make reasoning easier for us. These shortcuts actually turn out
to work pretty well in situations with which we are familiar, but
when we move into unfamiliar territory, these heuristics often serve
us very badly.
We have a tendency, for example, to interpret all data as confirming
our earlier opinions. There are fascinating studies of people listening
to presidential debates, and they invariably conclude that the debate
confirmed the wisdom of their earlier opinions and the choice of
candidate on the substantive issues.
People have a very hard time in keeping vivid information from
completely overwhelming dry information, which is why stories about
"my aunt who had this problem" invariably overwhelm more
systematic and reliable statistics
But the problem is not these rather mechanical kind of heuristics
alone. Let me tell you about a study in which I briefly participated
or in which I participated but in which somebody else did an awful
lot of the work.
A physician and I went around to randomly-selected males in Ann
Arbor and we said, "Doctors can't decide whether you ought
to be screened for prostate cancer. So what they have done is to
defer the decision to you. You're supposed to decide whether
you want to be screened. Here are all the data that you need in
order to decide whether you should be screened, and we were willing
to spend as much as an hour and a half talking with these men about
whether they wanted to be PSA screened or not, leaving quite aside
the question of just how many physicians in this world are going
to have the time to spend an hour and a half chatting with the patient
about PSA screening.
We worked very hard to be sure that we had solved the information
problem, and then we would say, "So do you want to be screened?"
And they would say yes or no. Either answer, of course, is acceptable.
But then we would say, "Why do you want to be screened?"
And he would say, "Well, I believe that prevention is always
better than trying to cure something, and so I want to be screened."
Now it is true that it is better to prevent a disease than to try
to treat it, by and large, but it is not true that PSA screening
The difficulty here was that they were really latching onto an
important idea that did apply to cancer in many sorts of circumstances,
just not this one. But we would never have found out that they
didn't understand that they were using a wrong heuristic had
we not been doing research and had the time to schmooze with them
about the nature of their reasoning.
But this was a situation where people went through their reasoning
fairly carefully. What I have learned from the studies is that,
by and large, people tend to make medical decisions with an alacrity
that precludes thought.
It is literally true that people make decisions on the spot a
very high percentage of the time. I have observed people being
given choices about modality of dialysis at some length, and this
is a caricature but captures the truth. The informer would start,
"We're very sorry to have to tell you, but your kidneys
are failing and you're going to need some kind of substitute
for them. We have a couple of things to offer you."
Their first thing is called hemodialysis. Now with hemodialysis,
we take two large needles, at which point the patient says, "Needles?
I'll take the other one. What is that?"
But sometimes they would listen placidly through the needles part
and would get to the part where we started to talk about peritoneal
dialysis which involves implanting a tube. "Implanting a tube,"
they said, "would it show in the summer when I was wearing
a bathing suit," or I suppose these days when you were just
And the physician would say, "Well, yes, it will."
"I'll take the other one. What was that other one? Oh,
yes, the one with the needles, I'll take that."
Now this is, first of all, happening at a speed that makes it
clear that people have not really assimilated and thought about
all the information that may be relevant. In fact, one of the questions
that people never asked and were never provided was data on the
relative morbidity and mortality of the different kinds of dialysis.
Now what is clear is that a significant number of the people who
make decisions are fastening onto a single factor and making that
the sole basis for their decision. Sometimes that's not a bad
thing to do, but with difficult medical decisions this is often
a reckless way of going about making decisions.
Another way that we know something about the process that people
go through in making medical decisions is that, when we ask the
people who write the kinds of books I've been describing, first
of all, they almost never describe making medical decisions. I
started reading these books in the hopes of writing a book on how
people made medical decisions, and I couldn't do it because
the data did not permit me to talk about that.
When they did talk about it, they talked about it in terms like
this: "I've learned to listen to my inner voice for guidance
when choosing treatments. If I get a ding" — parentheses,
a strong instinct — "about a vitamin, herb, drug, or
other treatment, I try it."
Lest you think that this person was not one of us, a sociologist
at Rice describes his experience with prostate cancer, an experience
that he found in some ways an enlivening one because he said the
research was so interesting that he forgot why he was doing it.
But when it actually came to choosing what kind of treatment he
was going to have, he realized that he had made a decision during
a conversation with the surgeon. He did not realize why he had
made the decision. He was not aware of having made the decision.
It was something that he discovered that he had done.
Let me say one last thing about patients and contemporaneous medical
decisions. Many patients do not want to make medical decisions.
That is a fact. That is one of the most carefully-studied facts
in the area that I am describing.
And lest you think it is because they are anxious about their
ignorance, the rates at which physicians say they want to make their
own medical decisions are approximately those of the rates at which
laymen say they want to make their own medical decisions. Now there
are many reasons for this, and the book that I assigned a little
section from talks about them at great length.
But if nothing else, it is going to be hard to get patients to
make good decisions when they don't want to make decisions at
Now, I'm sorry, Leon, when did I start?
CHAIRMAN KASS: Why don't we say at 11:15?
PROF. SCHNEIDER: Okay, I will try to stay within the various
promises I have made about how long I would talk.
So incompetent patients, what to do about them. Well, to your
predecessors in interest, the answer was clear. If people are not
going to be able to make their own decisions at some point, then
you should ask them in advance what decisions they want to have
and have them write that down, and then you will know. And there
are still many people who deeply believe this.
I assigned the article that Angela Fagerlin and I wrote about
living wills. I will not dwell on this subject at length, but I
can tell you that the editor of the Hastings Center Report tells
me that he has never gotten more responses to any article they have
ever published than that one, and, believe me, there are many people
who are deeply angry at me.
Just before I left Ann Arbor, I got a letter from a physician
who said, "You have destroyed my reputation in my community.
I have been arguing in favor of living wills for all these years,
and how do you explain the Schiavo case if what you said is true?"
This is a virtually verbatim quotation from the email message I
So I'm not jousting at a strawman, if that's not a terribly
mixed metaphor, when I tell you that this is a subject about which
there are still lively differences of opinions.
Now, essentially, much of my argument about why living wills do
not work and cannot be made to work is, again, an a fortiori argument
from the situation I've just described as contemporaneous medical
decisions. Essentially, if people don't make very good medical
decisions contemporaneously, it is not reasonable to expect that
they're going to make very good medical decisions about a situation
they have not experienced from among many situations that they might
encounter using treatments that they don't know anything about.
And, in fact, the problem of speculative decisions is one that many
patients themselves are well aware of.
Not least, too, are the informational problems. One of the things
that I have to say disturbs me most about the enthusiasm for living
wills is that everything that autonomists, bioethicists, and presidential
commissions say about the importance of informed consent evaporates
when they begin to talk about advance directives. People write
advance directives with literally no information at all, and they
live in a miasma of misinformation.
People believe, for example, that CPR works as often in life as
it does on ER.
And I'm not making this up. There are studies both of how
often CPR works on ER — a lot of the time most of the people
who get it are quite young and don't have heart problems particularly,
and there are a lot of studies about how much people know about
CPR. When you tell people what CPR actually does and how well it
works, people's enthusiasm for it plummets.
But people who write advance directives, whether they are administered
by doctors or by lawyers or by the many websites that are available
to you, or my mother's technique which was, after listening
to one of my colleagues talk about the Cruzan case on television,
she sends me, of course, regularly a packet of clippings that I
ought to be interested in. Affixed to one of them was a large post-it
note that she had written in pencil. My mother has a Ph.D. in English
literature; she is not an uneducated person and she's very bright.
She writes, "To whom it may concern:" on this post-it
in pencil. "I do not wish to be treated by heroic means or
extraordinary measures. Sincerely yours, Dorothy Schneider."
All of these people, even with the most expert help, do not have
the kind of information they need to make a decision in any way
that a bioethicist would recognize.
The other problems of living wills I've already discussed
at length in the article and will not repeat.
The bottom line that I think is often not paid as much attention
to as should be is that the evidence we have is that, by and large,
advance directives do not affect patient care. In other words,
whether they should work or not, they don't.
So if living wills don't work, what, then, for incompetent
patients? And this topic has been discussed largely in terms of
what standards we ought to use when surrogates make decisions for
incompetent patients. Of course, the two standards are what is
very oddly called substituted judgment, which means trying to do
what the patient would have done, and the best interest standard,
which means trying to do what you think would be best for the patient.
Those are the two standards.
I will not discuss the best interest standard because there is
nobody in the country who has written more about it and better about
it than Rebecca has, and I believe you're discussing it this
Let me talk about the subjective judgment standard — I'm
sorry, the substituted judgment standard. It asks the impossible.
It asks you to read patients' minds. You cannot read patients'
Because my time is drawing short, because there are many objections
I know you will have that I am anxious to explain away, let me just
say that this is another a fortiori argument. If patients do not
make decisions with full information, do not have coherent sets
of values that they reason from, do not predict their preferences
very accurately, do not spend much time reasoning about things,
and reason in ways that look close to arbitrary and trivial part
of the time, it is not going to be possible for surrogates to try
to replicate the process of reasoning that a patient would have
gone through to make a decision. It is in that sense that I mean
that the surrogate cannot read the patient's mind. Indeed,
as I've tried to suggest, the patient himself often has trouble
reading the patient's mind.
What we do know about the attempts to have surrogates read patients'
minds is very disturbing. I've already told you that observers
are not very good at describing how happy patients are in their
current medical situation. By the way, families are a little better
than chance. This is very crude but basically true. Doctors operate
at about the level of a coin flip in understanding how their patients
perceived their current situation.
Once again, these are not trivial problems that can be solved
by better education. Many problems cannot be solved by better education,
and this is not one that can be.
There is a very interesting study in which the surrogates were
people who had known the patient on average for 40 years. They
were mostly spouses of elderly people. They were asked to describe
how the patient would wish to be treated, how the patient would
forecast he would wish to be treated in a series of hypothetical
The surrogates who had known the patient for over 40 years were
right at a level a little better than chance. So then you said,
"Let them read the living will that these people have drafted
and that will solve the problem." The meter did not budge.
The predictions were no more accurate.
Then they said, "Well" — this is what many doctors
recommend — "just talk to your family about what you
want and then they'll be able to do it." So they had the
spouses sit down and talk about these things and to discuss the
living will as a conversation starter. Once again, the meter did
not budge. Accuracy of prediction did not increase.
Now let me say very briefly here that in some ways the discussion
about what the standard of decision for the surrogate to use should
be is not a discussion that will produce changes in the world.
The reason it won't produce changes in the world, at least in
any very direct way, is that — and here I'm speaking as
a lawyer — the law is very poorly situated to affect the way
these decisions are made. The law doesn't have a point of entry
into these decisions. These decisions are made in private. They
are made by people who do not wish to be supervised by the law and
who won't tell the law what's going on, by and large.
They are decisions which can be evaluated in terms of whether
the standards were properly applied only by describing the reasoning
that was gone through. However, both of these standards are sufficiently
indeterminate that you can justify almost any generally plausible
result under either theory. In fact, the two theories often collapse
into each other.
Furthermore, if there's one thing that's true about courts,
they do not want to take jurisdiction over these questions, and
they have repeatedly rejected opportunities to supervise this process.
Now where does that leave us? Well, in the law what we do if
substantive standards can't be found to resolve a question is
we say, let us try to find some procedure that we can use that will
tend to produce generally-satisfactory results in as many cases
as possible. When substance fails, we look to procedure. That
is one technique we can use.
Another technique we could use, and this is one that bioethicists
and presidential commissions rarely use, but seems to me to be quite
sensible, which is to ask patients in general how they would like
things to be solved. We spend a lot of time talking about autonomy,
but we always tell people what kind of autonomy they should want
and how they should want to use it.
If you go around and ask human beings how they want these decisions
to be made, they do not tell you that what they want is autonomy,
and they don't even feel in anything like the way that you would
suppose that what's important is the decision they would have
made. In fact, there are a couple of very interesting studies in
which patients are told, "Imagine you have the ideal living
will that perfectly expresses your preferences, and suppose that
some person appointed by the law were your surrogate, not necessarily
the person you would have chosen, but the person appointed by the
law to be your surrogate, and the surrogate wants to do something
different. Would you object?" And 54 percent of the people
said that, even in that situation, they would not object, that they
would want their decision to be overridden, not least because they
say, "Well, how do I know what's going to happen? They're
Furthermore, patients want not just a reasonable decision based
on the current facts; they also want a decision made by people they
love and by people who love them. This is very important to them.
And part of the reason it's very important to them, of course,
is because patients are non-autonomous in another sense. When courts
talk and bioethicists talk about autonomy, what they tend to talk
about are the interests of the patients. What patients tend to
talk about are the interests of their families. Patients are, obviously,
very concerned with how the decisions that are made for them will
affect their families, and that's one reason that they want
their families to be involved in these decisions.
So if we ask patients what they want, we get an answer that is
much more tolerant of a best interest kind of decision as long as
it is made by the right kinds of people, made, in other words, by
Now what about the lawyer's response trying to find a process?
Well, lawyers will instantly begin to think about formal processes
and that leads to talk about due process and that leads to misery.
But lawyers think a lot about informal process, and what lawyers
essentially imagine is a process in which the family and the doctors
negotiate, exchange information and opinions, and reach a process
of consensus. That is what I would suggest to you would be an informal
process that would be as likely as any other process that one can
reasonably imagine and pay for to reach relatively decent decisions.
And, in fact, there are studies of how these decisions are actually
made today. What they suggest is exactly what I have described,
that there is this process in which the patient is failing, and
somebody raises the possibility not of, as it is vulgarly put, pulling
the plug, but of beginning to pull back on treatments, of not pressing
as hard as you were, by gradually withdrawing particular kinds of
These studies suggest that over the space of a very short time,
for most patients as little as 24 hours, that decision is made.
Now the interesting question, of course, is whether these are good
decisions, and, of course, the problem is we have no way of evaluating
the decisions because we don't know what good is.
But when you ask the families who went through this process whether
they are contented with the decisions that they have made, the answer
is yes. They were not happy with the decision because the decision
is an unhappy decision, but they felt that they had gone through
a useful process; they had tried to do the best; they had tried
to do everything they could for the patient and to get as much information
as they could, and that they had reached a decision which they could
What they're unhappy about is what bioethicists tend not to
care about. It's much more commonplace and quotidian kinds
of things. Oddly enough, that's what competent patients making
contemporary decisions care about much more than their autonomy.
They want, of course, competent medical care. They also want
to be treated kindly, solicitously. That is what they often feel
they don't get, and that's what wounds them much more than
the kinds of denials of autonomy that bioethicists find themselves
What worries the families is that they are not adequately kept
involved day to day as decisions are actually — or as the
patient's situation changes. They have a hard time getting ahold
of doctors, and you have these pitiable stories of wives afraid
to go to the bathroom because, if they leave their husband's
side for two minutes, the doctor may come and go, and they won't
have a chance to talk with him for another 24 hours.
This is the kind of real medical situation that could actually
be solved by human intervention and ingenuity in a way that the
other kinds of problems I'm describing cannot, and solving those
sorts of problems would have much more to do with increasing human
happiness than one more test for how incompetent patients ought
to be treated.
I don't want you to think that I am abandoning autonomy.
Obviously, there are real reasons that we want people to be able
to make decisions for themselves. I would even argue that the process
I have described in which surrogates make decisions for you, in
following their best sense of what would be good for you, that that
process is not one that necessarily offends sensible ideas about
Speaking once again as a lawyer, people appoint agents to work
for them all the time on the understanding that the agents are going
to use their own best judgment and not the person's. That is
why I do not manage my own investments; I hire mutual funds to operate
We regularly hire people to work for us. In fact, there is a
quite respectable theory of political representation that says the
job of a representative is not to do exactly what he is told, but
rather to exercise his judgment on your behalf. It is associated
with Edmund Burke, of course, and he famously wrote to the people
who had elected him, "Your representative owes you not his
industry only, but his judgment and he betrays it instead of serving
you if he sacrifices it to your opinion."
Now I've taken up more time than I expected to, and I've
learned the best way not to go over your allotted time is simply
to stop. I will do that after saying one more thing that I did
promise to say, and that's to talk very briefly about why your
predecessors in interest, why so many bioethicists have produced
so many programs that work so very badly.
I think there are many answers, all of which I will be happy to
supply you with, but two I would like to leave you with. The first
is that they were in the grip of an ideology so strong to which
they were so deeply wedded, which worked in such absolutist terms
that it was all they could think about; their allegiance to the
principle of autonomy was so great that it was all they could think
Second, as Clark Gable said as he walked out the door, "Frankly,
my dear, I don't give a damn," was pretty much the attitude
of these entities, commissions and bioethicists, to empirical questions,
to the way world works. They did not actually stop to think about
whether what they were producing was going to produce the kinds
of changes in the world that they wanted.
They did not ask, ever, whether patients wanted to be made autonomous
in the ways that the bioethicists proposed to make them autonomous.
They did not ask how people actually go about making decisions.
They did not ask why things are the way they are. Things are the
way they are not necessarily for good reasons, but usually for real
reasons. If you want to change the world, you have to ask why it
operates the way that it does.
They believed that their principle could produce programs that
would work, and they were wrong.
CHAIRMAN KASS: This was, to say the least, not a disappointment
in expectations. Thank you very, very much for the lovely talk,
Jim Wilson, who is the Council's self-appointed most empirical
member, has the floor.
PROF. WILSON: I appreciate, Carl, in your wonderful testimony
you have limited your comments to lawyer and physicians and did
not include economists, all of whom have said there would be serious
agency problems such that the family wishing to inherit the ill
person's inheritance would vote for a preemptive withholding
of care. The economists get this wrong, as they get many other
I, like everyone in this room, or I assume most people in this
room, had to participate personally in the kind of decision you
discuss. My sister and I, talking with our doctor about my mother,
in 24 hours we made a decision. It was a sad decision. We believed
it was a necessary decision, and in a day or two she was dead.
This is not an unusual phenomenon.
How would you distinguish the process that you have proposed,
and in which I have engaged, from the kinds of assisted-suicide
laws that now appear to be on the books in the Netherlands and Oregon
in which something similar, though not, I think, quite identical
to what you describe is done, and it has led to deep criticism for
euthanasia, as sometimes used with respect to the Netherlands?
PROF. SCHNEIDER: Well, let me say several things. First
of all, I'm delighted to take this opportunity to acknowledge
that some of my allegiance to empiricism came from having been a
student in Professor Wilson's class on bureaucracy more decades
ago than either one of us wants to admit.
In fact, it was my recollections of that very class that urged
me, that led me to think quite often both in the book that I wrote
on autonomy that I assigned part of and in preparing for today,
that instead of talking once again about advance directives, that
you might be better employed if you spent your time thinking about
what is really one of the things that's really changing the
situation of American patients and of American medical ethics and
bioethics, which is that patients and doctors and bioethicists increasingly
live in a bureaucratic environment that shapes their lives in ways
that are often very painful and that we do not think very much about.
Let me say, second, that the law has not known what to do with
what you and I have been talking about, with the realization that
what most people want is for the family to make their decision;
that what most families want is to be able to make the decision,
and that there are special reasons for thinking the family might
make a good decision and wanting to make the decision even if we're
not so confident that it's going to make a wonderful decision.
The law has been torn in ways that the law can't resolve,
partly, of course, because the law isn't the law; the law, as
Mary Ann would remind me, if I did not say, in the United States
comes from well over 50 jurisdictions, and it comes from many institutions
within each jurisdiction that produce different sorts of results.
But even the United States Supreme Court can't decide whether
the family is endowed with virtually holy powers over its members
or whether the family is the worst thing that any member ever encountered.
You have some very strange opinions in — let me take some
state court examples.
You have these tragic situations in which adult schizophrenics
are being cared for by their families, and they go to the court
and they say, "Our son does not want to take anti-psychotic
medication. We believe that would be in his interest."
And the court says, "So you want to be appointed his guardian.
You may be appointed his guardian, but we're not going to make
you his guardian to make medical decisions for him because we don't
trust you to do it, because your interests are different from his,
and this is a decision that should be made only with his interest
in mind." And by that, they mean his interest as opposed to
the family's. They look at it with deep skepticism.
Similarly, there are some very interesting cases in which families
come to a court and they say, "We want your permission to allow
or to require or to have one of our children donate a kidney to
another child." And some of the courts say, no, that is a
decision that no family should ever be allowed to make because of
this kind of conflict of interest that families have.
So you have Parham v. J.R. on one hand, in which the United States
Supreme Court says, of course, parents should make medical decisions
for their children; that is part of the holy right of being a parent.
At the same time, you have this kind of hostility.
And, of course, both attitudes have real basis both in law and
in policy. There are good reasons for both.
What you have to do here is something the courts cannot do, particularly
when they are deciding constitutional cases, and that is to say,
"We have to choose a public policy that is not ideal because
there is no ideal public policy. We have to choose a public policy
that will produce good results as much of the time as can be arranged."
And that means we're going to have to tolerate some bad decisions.
That is something that people are very unwilling to do because the
bad decision looks so horrible, but any system will produce bad
Now assisted suicides, euthanasia, the answer is, yes, that is,
that it's not so clear that the process I'm describing is
so different from what is tolerated in those circumstances, and
the reasons that I distinguish between the two, I think that legalizing
assisted suicide is a mistake, has to do with the need to draw an
arbitrary line someplace between always treat all the time in every
way and the increasingly anarchic rule that a place like Holland
seems to have.
So I think that what we do is to draw a line, which may not make
entire logical sense, between allowing people to be fairly free
about withdrawing care but not letting the same people reach a decision
with the same effect if it involves something that looks to us more
PROF. WILSON: Can I just modify? It seems to me, from
the little I know about the Netherlands law, that one of its consequences
is to draw the line in a way that favors the doctors more than the
families. Now I may be in error in that judgment. People dispute
what's going on there.
But if it draws a line in a way that favors doctors more than
families, it has made, to me, a grievous mistake because it misjudges
and I think weakens a doctor's obligation, first and foremost,
to heal the patient. If it draws the line in a way that simply
says the doctor may participate in a conversation with family members
and give such advice as he may have, then that would be a different
Do you happen to know how that line is drawn in the Netherlands?
PROF. SCHNEIDER: I don't know what's happening
in the Netherlands because the evidence is so very difficult to
get. When I have spoken with Dutch physicians and bioethicists
about this, they become easily angered at the suggestion that anything
is happening in Holland that should not be.
On the other hand, there are people who believe with a crusader's
zeal that what is happening is simple butchery, and the anecdotes
are very disturbing, like physicians deciding unilaterally that
a nun ought to be euthanized because the only objection she had
to being euthanized was a religious one, and that if she had been
thinking more realistically without the influence of religion, she
would have reached a different conclusion. You know, these sorts
of anecdotes, of course, are not a basis for — and we don't
even know if they're true.
I would say that you point to, obviously, one of the dangers of
the proposal, which is that bad decisions will be made, particularly
bad decisions to withdraw treatment too early. The one thing I
would say is that it is, as you know, a mistake to suppose that
the only agency of social regulation is the law. These are not
decisions that are made in a culturally-free way or in an institutionally-free
way. It is open to the physician and it is open to the family to
object to a decision not to treat. Conventionally, those decisions
can be taken to ethics committees, and, in fact, they can be taken
to courts, and sometimes they are.
CHAIRMAN KASS: Could I follow up, with your permission,
In the presentation, which also prompted Jim's question, you
talked, you highlighted those circumstances where the patient is
failing and we're really talking about acutely end-of-life decisions,
and that's, I think, why the question of assisted suicide sort
of hovers over that discussion.
But in the previous meetings of this Council in this area, we
have spent a lot of time talking about the questions of medical
decisionmaking for incompetent patients who are not immediately
dying, and the classic problem is the problem of people with Alzheimer's
Disease in various stages, where the question is not, well, should
you begin to draw back from things that you're doing because
the end seems imminent, but how should you decide about how to treat
various kinds of eruptions and supervene on this illness at various
different stages? In fact, we're going to get into the discussion
of that this afternoon with the help of Rebecca's words, if
not her presence.
So I wonder whether you would be prepared to generalize the advice
that you've given; namely, with respect to procedures, some
kind of consultative process, family-central in a way of the loved
ones with the responsibility to help decide, participation of the
patient if and when possible, participation of the physician and
the like. Is that true? The first point. And, second, do you have
any intuitions on the substantive questions? Or, maybe to put it
another way, are there boundary conditions that you would place
on the discretion of the family decisionmakers where the question
is not, "Shall it be these 24 hours or 48 hours or another
I'm not sure I said that very well, but two questions: one
about the process generalized when you don't face an immediate
end-of-life question, and, second, do you have any sort of substantive
comments about the kind of discretion that families should have?
Would this Council be well advised to consider setting some limits
or trying to articulate some limits or is this really a question
of you simply have to judge to prudence, to loving prudence, on
PROF. SCHNEIDER: It seems to me that what I have said
about, as you correctly point out, end-of-life decisions applies
to more ordinary, more prolonged kinds of situations. At least
important differences do not occur to me. In fact, part of what
I'm trying to do is to allow for a broader range of interests
to be accommodated than are accommodated when you start setting
It is one of the mysteries of bioethics why the patient's
interests are the only interests that are supposed to be taken into
account in making medical decisions when there are so many other
people who are at interest. Here, of course, the kind of situation
you're hypothesizing is one where, by and large, families have
been spending a lot of time taking care of the patient and have
genuine interests that cannot be accommodated by the law and by
legal standards and by formal standards, but that can be accommodated
by more informal processes.
Should the law set some sort of outer limits? Well, of course,
the law does set some —
CHAIRMAN KASS: Excuse me. Not necessarily the law —
PROF. SCHNEIDER: Fair enough.
CHAIRMAN KASS: — because our audience here might
be best practices committees that are fashioned or —
PROF. SCHNEIDER: Fair enough.
CHAIRMAN KASS: — or the community. It wasn't simply
a question of legislation.
PROF. SCHNEIDER: Should formal standards somehow be set?
I agree with what Rebecca says about the desirability of looking
at patients' best interests all along the line and using the
best interest standard instead of trying to go through the fiction
of substituted judgment, because I think it allows you to get around
the kinds of problems of faulty decisionmaking that I have described
and because, well, of all the reasons that Rebecca says, and because
I agree with all of those.
Obviously, there are limits and the law does set some limits that
you can't kill people. There are those sorts of constraints,
and there are the kinds of informal limits of what people will tolerate
and what they'll object to and when they'll fight that are
I have to say I can't imagine how you can usefully write a
set of standards that will apply very well here, partly for the
kinds of reasons I was suggesting beforehand. You really have to
know what the range of situations is, and you don't.
So quite apart from the difficulty of generalizing, you've
got to have more data than you've got. What I would do at this
point is what the lawyer in me suggests, which is to rely on a more
Things have moved very fast in this area. Standards have changed
very quickly. It's not as though people aren't thinking
about this and aren't responding.
I would, in the absence of information that some things are going
seriously wrong more frequently than is tolerable, I would wait
to see how standards develop informally and what kinds of situations
recur and what sorts of rules seem to be working out well.
CHAIRMAN KASS: Gil Meilaender.
PROF. MEILAENDER: There was so much that seems to me wise
in what you said, and so in a way I would like to just leave it
alone, but I wonder if I can just press you to comment on a couple
of different things. They cut in different ways. They don't
cut in just one way.
First of all, you said one of the reasons you thought that bioethics
and predecessor commissions, and so forth, have gone wrong here
is that they were in the grip of an ideology about autonomy, and
I do not disagree with that. I agree with it, in fact.
But one might argue that the ideology was necessary in the face
of kind of a long tradition of medical paternalism, and so forth.
I mean that's sort of a standard answer.
I just wonder, I would be interested to know whether you think
there's anything to that standard answer, and that in a way
that was a correction to which you're now providing a correction,
and so forth. That's one kind of question.
The other one in a way is related to these previous questions
about boundaries and standards. Just, again, not so much asking
you to develop a whole set of standards, I take what you say about
the difficulty of that. I'm just curious to know what you would
say about a few sorts of cases in terms of whether we can set standards.
For instance, the kinds of cases of which there have been several
over the years of children born who will be, at least to some degree,
retarded who are in need of immediate surgery, which we would probably
give to any non-retarded child, whether any sort of standards there,
whether that's sort of a bosom-of-the-family decision in your
Or the case of parents who would like to have an older retarded
child sterilized, for instance. I took your discussion of the schizophrenia
example to be rather sympathetic to the parents, and surely the
sterilization cases are every bit as complicated in some cases for
the family in terms of what they have to deal with, but it's
a different kind of issue.
And without developing a code or anything, I would just be curious
to know kind of how you think about cases like that.
PROF. SCHNEIDER: The first question is about whether the
strong version of autonomy was a necessary corrective to medical
imperialism. First, I think that the strong version of autonomy
actually served a variety of implicit purposes, but did so by indirection
and very clumsily and in ways people didn't fully appreciate.
One of the reasons that you see a lot of the literature that you
see about autonomy and end-of-life decisions is because people were
implicitly assuming that doctors were crazed to keep metabolic function
going, that they protracted life too much. You see that in discussions
of the living will where the assumption is the living will is going
to say: Don't treat me.
In fact, one of the scary experiences I have once a year, I teach
fourth year medical students. That's fun. I enjoy them. They're
very bright, and I like them. But the first day I always use a
case in which a patient comes into the hospital with a living will
and she has unhappy things happening to her, and I say, "So
do we treat this nice lady?" And they say no.
And I say, "Why?" And they say, "Well, she has
a living will."
And I say, "What does it say?" And they say, "Well,
she has a living will. You don't treat her."
This is one of the many reasons I don't have a living will.
Doctors cannot be persuaded to read them. Nurses don't read
them, either. They think they're a DNR order.
Now what's happened, it's not clear that doctors really
were that mad to keep people indefinitely alive in the first place.
It is increasingly plain that that is far less true than it once
was. I'm not saying that there are not still lots of doctors
who may do that, but if you look at the data, they suggest that
doctors' attitudes have changed a lot on this question.
When I hang around ICU units, what I see in my teaching hospital,
what I see is the attending teaching interns and residents to begin
hanging crepe, to begin talking about the limits of what medicine
can do, and teaching the doctors to initiate the discussion of stopping
So one of the problems with the whole autonomy device is that
it has incorporated these kinds of implicit, substantive goals that
are thought to be promoted by this strong version of autonomy.
Mastectomies, Jay Katz' book on The Silent World of Doctor
and Patient essentially says, and it's a wonderful book
that you should all read if you haven't, essentially says one
reason we want patients to have autonomy is because doctors were
performing too many mastectomies.
So I think a lot goes on in the way of attempts to change particular
aspects of medicine that seem to be promoted by promoting a strong
version of autonomy. I think that one thing that it would be wise
to do is to try to check up on what sorts of assumptions you're
making about what is actually happening and what effect a stronger
version of autonomy might have.
The other thing I want to say about that is it is wrong to think
that doctors, and anybody else, will only change their behavior
if the law tells them to or if bioethics tells them to. People
are all, we're all affected by the stronger movements in our
culture, and one of those movements is you don't make decisions
for other people. In fact, one of them is it's wrong of other
people to ask me to make decisions for them.
Doctors, I think, insofar as they've changed their behavior,
have done it for lots of reasons that would have applied even had
there been no exaggerated version of autonomism.
The second question was about whether there aren't situations
in which I would begin to draw lines. The answer is yes, but not
a priori. If I were you, I would not set out to say where should
the lines be drawn.
I think that the situations that you have described are exactly
the kinds of situations where you should proceed cautiously and
incrementally in the common-law way that I've described, and
when one of these cases actually arrives, you can look at it in
some of its actual facts and make a more intelligent decision than
you can make by reasoning about it.
I would be inclined to want to intervene in your first case and
not in your second case.
CHAIRMAN KASS: Gil, do you want to follow up?
Well, let me pursue this last as well. Again, I don't want
to steal a march on this afternoon's discussion, but precisely
because people, the culture believes that we should make our own
decisions and that it would be wrong, many people believe it would
be wrong to place such burdens on others, and we have had a discussion
of a paper of Gil's at a previous meeting on this subject, there
is a certain kind of pretense that there aren't substantive
considerations that actually enter into either the substituted judgment
or to the best interest standards when applied.
It seems to me one of the concerns is we have in a way, we have,
I suppose — I was going to propose two polar choices, and
I think you're probably suggesting that there really is a third.
But what I was starting to say was that you've got two choices.
You can either pretend that the situation is good if the process
is good and we don't pay attention to the substance. If everybody
is sort of comfortable, we've gone through this, that that's
the best to hope for, and we kid ourselves in thinking that due
process is right conduct in these matters.
The alternative is to make explicit the fact that there are, in
fact, substantive decisions that are being made about when a life
is or is not worth living, and that perhaps less mischief were done
if we sort of owned up to that fact, and then tried to set certain
kinds of boundary conditions that would hem in discretion not only
against undertreatment, but also against certain kinds of overtreatment
and, of course, against deliberate killing.
So I think maybe you're suggesting that we recognize that
best interest standards should operate; they are least dangerous
when nobody tells you what they should be, and you allow the people
on the spot to conscientiously worry this through, providing you
might say, well, no direct killing, but after that who's to
PROF. SCHNEIDER: No. No, that's not exactly what
I'm saying. I'm saying that you may very well, as you begin
to see cases in which rather mildly retarded people, children, are
being allowed to die when everybody else would be allowed to live
— in fact, those are cases where there are actually legal
rules — that as those develop, that then you say this far
and no further, but you don't try to sit down in advance and
imagine what circumstances you would permit and what circumstances
you wouldn't permit, partly because I think these cases are,
as lawyers say, very fact-intensive; that they will look very different
depending on rather mild changes in a whole lot of different factors.
It's the same problem as the problem of the planned economy;
you just can't anticipate all of those things in advance.
CHAIRMAN KASS: Dan and then Paul
DR. FOSTER: I can't speak for all doctors at all in
these issues, and I know a lot of doctors, but one of the things
that has not come up here in this concern about doctors and patients
and families making decisions is this: that very often, when a
serious illness comes up and there are options, whether it's
prostate carcinoma or something, almost always the family in loving
asks me this question: What would you do if this was your mother?
Or what would you do if this was your son? Or what would you do
if this was your wife?
In other words, there is a conscious appeal — if they trust
the physician, then they want to hear from somebody who is presumably
reasonably knowledgeable about this, about what you would do. Sometimes
decisions are very hard to make, but they always want, it seems
to me they want to ask.
I think I cited this paper sometime in the past. I can't
remember whether I did. But there's a most famous paper written
by the late Franz —
PROF. SCHNEIDER: Franz Ingelfinger.
DR. FOSTER: — Ingelfinger called "Arrogance."
PROF. SCHNEIDER: Uh-hum.
DR. FOSTER: And you will remember that he, who had worked
all his life on the esophagus, got an esophageal carcinoma, and
he was the editor of The New England Journal of Medicine. As a
consequence, he was probably the best known person in the world
since this was the most widely read journal in all the world. And
when his diagnosis was made known, he was just drowned in opinions
from doctors all over the world about what he should do for therapy.
His children were doctors also, and he described his anxiety about
trying to decide radiation or surgery first, or whatever.
Finally, somebody said to him, "Franz, what you need is a
doctor." And he said he followed that advice and got an internist
that he trusted and he said, "I'm going to do what you
think is best for me."
You know, the discussion often comes to the issue of arrogance
in doctors, wanting to control things. But in a real doctor-patient
relationship, which is hard, as you say, patients want to know what
their doctor thinks. One problem is there is little time for talk,
just time to talk about a decision —
PROF. SCHNEIDER: It always was.
DR. FOSTER: It maybe always was. Perhaps it is not as
stark a new problem as we sometimes make it. Well, you know, there's
a difference between making an informed consent that's informed
by the best science that you have and an informed consent that is
given just because this is the way you feel. I mean you've
made that point.
I'm only arguing to say that I think most people really would
like to have their physician giving an opinion about the best way
to go when you have a serious illness. A trivial illness, it doesn't
make too much difference. I think that they will oftentimes trust
that, and I think that's what Franz Ingelfinger, that's
why he wrote that article in defense of true physicians. I know
there are a lot of people who don't meet the standards of true
physicians, but true physicians really do want to try to do what's
best for their patients under the circumstances, whether to withhold
treatment or to give it maximally.
PROF. SCHNEIDER: Well, this is my opportunity to say that,
of course, I agree with the heart of what you're saying, but
that it's also true that bad things happen when you trust physicians,
that they make decisions for other people sometimes rather rapidly
and unthinkingly, and lots of people don't have physicians they
trust, and never did. It's not just managed care here; these
are problems that go back decades and decades.
And I don't want to be understood to be depreciating any of
the harms that are done when you set up a world in which there are
not ways of stopping people from ending treatment on children where
it shouldn't be ended.
But I also want to say the world has changed a lot. It used to
be that people wrote articles in medical journals talking about
how they starved to death defective children in respectable hospitals.
Because social attitudes have changed so very dramatically about
that, that is something which is now unthinkable or at least will
produce very great anger and very considerable responses.
The problem, of course, is that we can't know all of the bad
things that we object to confidently enough to be able to write
these strong rules in advance. That is what I'm having difficulty
DR. FOSTER: Well, just to cite yourself in response, you
point out that, whether it's the Supreme Court or anything else,
there are possibilities of bad decisions that are made, not for
bad reasons, but because the evidence is not there.
I mean we treated with estrogens for a long time because we think
that this is good, and now we can't take estrogens because we're
going to get cancer.
I always teach the residents, when the evidence changes, we change.
But given the evidence, the best that we have, I mean we're
going to make mistakes because sometimes we don't know what
the genetic background is and sometimes we're just careless,
and sometimes we're just not meeting our responsibilities.
But there's never going to be a case, as your own argument was,
from the courts where bad decisions are not going to — that's
an irrelevant question to me.
The question to me is, do you get better decisions if you listen
to the doctor as opposed to listening to the family under those
circumstances? Have you studied that?
I mean, the errors that doctors make are both sad and in some
cases indefensible, but that's the question that I want to know.
If you take a large population in studying this — maybe there
is such a study; I don't know. You may know of such a study
since you know almost all of this stuff.
But what I would really like to know is, would you get a better
case from having consultation with the doctors and in general following
the physicians' recommendation for care here or to simply say
that the physician will give you — there are four ways you
might treat prostate cancer; which do you want? You know, you use
those sorts of explanations, and they are likely to quickly say,
well, if I can get by without surgery, I'm going to stick rods
or pellets in my prostate, and so forth.
That's the question. Is there a study that would give you
some hint as to which, by any objective standards, you would get
some idea about which was the best way to go?
PROF. SCHNEIDER: It's the "any objective standard"
phrase that's the problem, that has precluded any such study,
because if you knew what those were, then we wouldn't have to
be having these discussions.
CHAIRMAN KASS: Paul McHugh, take the last question.
DR. McHUGH: I have just a brief question and point because
I found your paper so wonderfully enriching and very supportive
of my prejudices.
PROF. SCHNEIDER: I can't think of a better endorsement.
DR. McHUGH: I've been fighting living wills since
I first heard the term.
But there is an issue, and I want to come back to what Professor
Wilson was talking about because both of you are my admired empiricists.
I believe that the assisted suicides in Oregon are usually killing
patients of mine; that is, they're killing psychiatric patients,
with other kinds of conditions, of course, but who have conditions
that I usually treat.
Now that's an empirical question, and I would like to know
the answer to it and I would like to have it proven or disproven.
But the people in Oregon who said that they set up this as an experiment
now say we can't look at those records because of the privacy
rules and the privacy kinds of things.
What are you lawyers going to do in relationship to this matter?
Because it's clearly an issue of conflicting goods here, but,
ultimately, lives are at stake and the character of doctoring is
also at stake.
PROF. SCHNEIDER: Well, first of all, lawyers do what their
clients tell them to do. Second, I think that the Oregon experiment
suggests one of the benefits of (a) the process I've been describing
and (b) of our federal system.
Justice Brandeis famously talked about the states as laboratories
of democracy, and this is exactly the kind of thing that he had
But you're quite right that this extremely valuable and possibly
extraordinarily illuminating experiment that might answer the kinds
of questions that we were discussing will be useless if you can't
get the data.
DR. McHUGH: It's a hell of a laboratory where they
won't let you look at the data.
PROF. SCHNEIDER: Then it's not an experiment.
DR. McHUGH: No, that's right.
CHAIRMAN KASS: Thank you very much.
PROF. SCHNEIDER: Thank you.
CHAIRMAN KASS: Thanks to both of you for really a wonderful
We've run over a bit. We were supposed to reconvene at 2:00.
Does anybody know convenient places where people could grab lunch?
There aren't any in this building.
PROF. MEILAENDER: There's a Burger King not far away.
CHAIRMAN KASS: We'll meet again at two o'clock.
(Whereupon, the foregoing matter went off the
record for lunch at 12:36 p.m. and went back on the record at 2:05