The President's Council on Bioethics click here to skip navigation


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 of Michigan

CHAIRMAN KASS:  During the break, Judy Crawford has left at our place the information regarding dinner for those who are joining us.  "I" Street is one street north, and the way to get there is to walk to "I" and just head west.  We will meet there at 6:30, just in case I don't remember in the afternoon session.  The little gray cells are not what they used to be.

This second session actually will pick up on themes that were at the very end of Tom Cole's paper, where he discussed questions of independence and dependency.  It's a great pleasure for me to again welcome Carl Schneider, who brings to this subject of medical decisionmaking the perspective not just of an autonomous autonomist, but a whole career of teaching family law, among other things.  I think that and the fact that he has a kind of muscular way of thinking and writing, which I very much admire — I appreciated these papers that you sent us very much.

We've had discussions in here before about the advance directive as one way to deal with the problem of decisionmaking for those who are incapable of making decisions for themselves, and Dr. Schneider has kindly agreed to lay out for us some of the alternatives, the strengths and weaknesses, and help us advance our own thinking on this subject.

So welcome again, and the floor is yours.

PROF. SCHNEIDER:  Thank you.  It's very kind of you to have me here, particularly since you don't need me; you have Rebecca Dresser, who is as important and useful an authority on this subject as the country has to offer.  It's a particular pleasure for me to be here because I know and esteem so many of the people on the commission and their work.

Perhaps I should say a word about myself so that you will know from whence I come.  First of all, I am a lawyer, not a doctor, although I have an appointment at our medical school.  This always confuses people.  You know that I'm not a doctor because I do not have slides for you.


I work in the part of bioethics that you have generally been ignoring, and that is the part that deals with the ethics of medical decisions in various forms, the doctrine of informed consent, various sorts of attempts at advance directives, end-of-life decisionmaking generally, physician-assisted suicide; those sorts of questions are the kinds of questions that you seem to be approaching and that I have been dealing with.

I am not just a lawyer, but an empiricist.  I plan to provide you not so much with information about what I think, which should not be very interesting to you, but information about how the world works, which ought to be very interesting to you.

The kind of empirical information I will be drawing on starts with medical studies.  One of the wonderful things about doctors is they often seem to care how the world actually functions and they study it.  I have tried to read, as systematically as possible, the medical literature that deals with the ways decisions are actually made.  I've spent a good deal of time doing research among doctors and patients, observing and interviewing them.

There is another source of data that I have found that's quite wonderful.  In the United States today there is a kind of cultural taboo against being seriously ill and not writing a book 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 in writing.

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 medical decisions.

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 understood.

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 correctly.

But let's suppose all of these problems vanished, that we have patients with perfect information and perfect understanding.  Will that solve all of the problems that patients have in making decisions?  The answer is no.

And one reason that the answer is no is because what bioethicists generally assume is that patients come to decisions with a coherent and well-worked-out set of values relevant to the questions before them.  They do not.  Most people have better things to do with their lives than working out the kinds of values that you might need for making unanticipated medical decisions or even anticipated ones.

And, in fact, what psychologists who study these things tell us is that we do not make decisions by consulting our values, reasoning from them, and then doing what the reasoning tells us.  Rather, our values tend to be explanations that we give for the decisions we make and not the motives for the decisions themselves.  This is one reason that so often people make very inconsistent kinds of choices.

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 very accurately.

Now part of what's going on here is that, in fact, it's true that experience is in many ways the best teacher, and experience often counsels us to reconsider our opinions.  People these days routinely recite the mantra that the quality of life is more important than the quantity of life, and they believe it up to the point at which the quantity of life actually becomes an issue, at which point they become remarkably unwilling to give up increments of quantity in order to get fairly large increments of quality.  There are some very interesting studies of this.  People who are very ill think that their lives are much more satisfactory than observers of their lives think.

There's a wonderful book by Wilfrid Sheed on his experience with depression and cancer and polio, and I think drug addiction.  He said he quickly learned that cancer, even more than polio, has a disarming way of bargaining downward, beginning with your whole estate, and then letting you keep the game warden's cottage or the badminton court, and by the time that it has frightened you to death and threatened to take away your very existence, you would be amazed at how little you're willing to settle for.

This is true, but when people are making decisions, this is not what they imagine themselves thinking.  But let's suppose all of these problems of information and values and psychological insight, let's suppose those problems all away.  Then can patients make good decisions?  And the answer is, you'll be surprised to hear, still no, and that is because people then have to go through quite an arduous process of reasoning about which means will best serve their ends.

That is something that people seem not to do very well.  There are many reasons for this.  One of them is that we all, in thinking about all kinds of problems, rely on what psychologists like to call various kinds of heuristics, shortcuts in our thinking that make reasoning easier for us.  These shortcuts actually turn out to work pretty well in situations with which we are familiar, but when we move into unfamiliar territory, these heuristics often serve us very 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 prevents diseases.

The difficulty here was that they were really latching onto an important idea that did apply to cancer in many sorts of circumstances, just not this one.  But we would never have found out that they didn't understand that they were using a wrong heuristic had we not been doing research and had the time to schmooze with them about the nature of their reasoning.

But this was a situation where people went through their reasoning fairly carefully.  What I have learned from the studies is that, by and large, people tend to make medical decisions with an alacrity that precludes thought.


It is literally true that people make decisions on the spot a very high percentage of the time.  I have observed people being given choices about modality of dialysis at some length, and this is a caricature but captures the truth.  The informer would start, "We're very sorry to have to tell you, but your kidneys are failing and you're going to need some kind of substitute for them.  We have a couple of things to offer you."

Their first thing is called hemodialysis.  Now with hemodialysis, we take two large needles, at which point the patient says, "Needles?  I'll take the other one.  What is that?"


But sometimes they would listen placidly through the needles part and would get to the part where we started to talk about peritoneal dialysis which involves implanting a tube.  "Implanting a tube," they said, "would it show in the summer when I was wearing a bathing suit," or I suppose these days when you were just wearing clothes.


And the physician would say, "Well, yes, it will."  "I'll take the other one.  What was that other one?  Oh, yes, the one with the needles, I'll take that."

Now this is, first of all, happening at a speed that makes it clear that people have not really assimilated and thought about all the information that may be relevant.  In fact, one of the questions that people never asked and were never provided was data on the relative morbidity and mortality of the different kinds of dialysis.

Now what is clear is that a significant number of the people who make decisions are fastening onto a single factor and making that the sole basis for their decision.  Sometimes that's not a bad thing to do, but with difficult medical decisions this is often a reckless way of going about making decisions.

Another way that we know something about the process that people go through in making medical decisions is that, when we ask the people who write the kinds of books I've been describing, first of all, they almost never describe making medical decisions.  I started reading these books in the hopes of writing a book on how people made medical decisions, and I couldn't do it because the data did not permit me to talk about that.

When they did talk about it, they talked about it in terms like this:  "I've learned to listen to my inner voice for guidance when choosing treatments.  If I get a ding" — parentheses, a strong instinct — "about a vitamin, herb, drug, or other treatment, I try it."

Lest you think that this person was not one of us, a sociologist at Rice describes his experience with prostate cancer, an experience that he found in some ways an enlivening one because he said the research was so interesting that he forgot why he was doing it.


But when it actually came to choosing what kind of treatment he was going to have, he realized that he had made a decision during a conversation with the surgeon.  He did not realize why he had made the decision.  He was not aware of having made the decision.  It was something that he discovered that he had done.

Let me say one last thing about patients and contemporaneous medical decisions.  Many patients do not want to make medical decisions.  That is a fact.  That is one of the most carefully-studied facts in the area that I am describing.

And lest you think it is because they are anxious about their ignorance, the rates at which physicians say they want to make their own medical decisions are approximately those of the rates at which laymen say they want to make their own medical decisions.  Now there are many reasons for this, and the book that I assigned a little section from talks about them at great length.

But if nothing else, it is going to be hard to get patients to make good decisions when they don't want to make decisions at all.

Now, I'm sorry, Leon, when did I start?

CHAIRMAN KASS:  Why don't we say at 11:15?

PROF. SCHNEIDER:  Okay, I will try to stay within the various promises I have made about how long I would talk.

So incompetent patients, what to do about them.  Well, to your predecessors in interest, the answer was clear.  If people are not going to be able to make their own decisions at some point, then you should ask them in advance what decisions they want to have and have them write that down, and then you will know.  And there are still many people who deeply believe this.

I assigned the article that Angela Fagerlin and I wrote about living wills.  I will not dwell on this subject at length, but I can tell you that the editor of the Hastings Center Report tells me that he has never gotten more responses to any article they have ever published than that one, and, believe me, there are many people who are deeply angry at me.

Just before I left Ann Arbor, I got a letter from a physician who said, "You have destroyed my reputation in my community.  I have been arguing in favor of living wills for all these years, and how do you explain the Schiavo case if what you said is true?"  This is a virtually verbatim quotation from the email message I got.

So I'm not jousting at a strawman, if that's not a terribly mixed metaphor, when I tell you that this is a subject about which there are still lively differences of opinions.

Now, essentially, much of my argument about why living wills do not work and cannot be made to work is, again, an a fortiori argument from the situation I've just described as contemporaneous medical decisions.  Essentially, if people don't make very good medical decisions contemporaneously, it is not reasonable to expect that they're going to make very good medical decisions about a situation they have not experienced from among many situations that they might encounter using treatments that they don't know anything about.  And, in fact, the problem of speculative decisions is one that many patients themselves are well aware of.

Not least, too, are the informational problems.  One of the things that I have to say disturbs me most about the enthusiasm for living wills is that everything that autonomists, bioethicists, and presidential commissions say about the importance of informed consent evaporates when they begin to talk about advance directives.  People write advance directives with literally no information at all, and they live in a miasma of misinformation.

People believe, for example, that CPR works as often in life as it does on ER.


And I'm not making this up.  There are studies both of how often CPR works on ER — a lot of the time most of the people who get it are quite young and don't have heart problems particularly, and there are a lot of studies about how much people know about CPR.  When you tell people what CPR actually does and how well it works, people's enthusiasm for it plummets.

But people who write advance directives, whether they are administered by doctors or by lawyers or by the many websites that are available to you, or my mother's technique which was, after listening to one of my colleagues talk about the Cruzan case on television, she sends me, of course, regularly a packet of clippings that I ought to be interested in.  Affixed to one of them was a large post-it note that she had written in pencil.  My mother has a Ph.D. in English literature; she is not an uneducated person and she's very 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 afternoon anyway.

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' minds.

Because my time is drawing short, because there are many objections I know you will have that I am anxious to explain away, let me just say that this is another a fortiori argument.  If patients do not make decisions with full information, do not have coherent sets of values that they reason from, do not predict their preferences very accurately, do not spend much time reasoning about things, and reason in ways that look close to arbitrary and trivial part of the time, it is not going to be possible for surrogates to try to replicate the process of reasoning that a patient would have gone through to make a decision.  It is in that sense that I mean that the surrogate cannot read the patient's mind.  Indeed, as I've tried to suggest, the patient himself often has trouble reading the patient's mind.

What we do know about the attempts to have surrogates read patients' minds is very disturbing.  I've already told you that observers are not very good at describing how happy patients are in their current medical situation.  By the way, families are a little better than chance.  This is very crude but basically true.  Doctors operate at about the level of a coin flip in understanding how their patients perceived their current situation.

Once again, these are not trivial problems that can be solved by better education.  Many problems cannot be solved by better education, and this is not one that can be.

There is a very interesting study in which the surrogates were people who had known the patient on average for 40 years.  They were mostly spouses of elderly people.  They were asked to describe how the patient would wish to be treated, how the patient would forecast he would wish to be treated in a series of hypothetical situations.

The surrogates who had known the patient for over 40 years were right at a level a little better than chance.  So then you said, "Let them read the living will that these people have drafted and that will solve the problem."  The meter did not budge.  The predictions were no more accurate.

Then they said, "Well" — this is what many doctors recommend — "just talk to your family about what you want and then they'll be able to do it."  So they had the spouses sit down and talk about these things and to discuss the living will as a conversation starter.  Once again, the meter did not budge.  Accuracy of prediction did not increase.

Now let me say very briefly here that in some ways the discussion about what the standard of decision for the surrogate to use should be is not a discussion that will produce changes in the world.  The reason it won't produce changes in the world, at least in any very direct way, is that — and here I'm speaking as a lawyer — the law is very poorly situated to affect the way these decisions are made.  The law doesn't have a point of entry into these decisions.  These decisions are made in private.  They are made by people who do not wish to be supervised by the law and who won't tell the law what's going on, by and large.

They are decisions which can be evaluated in terms of whether the standards were properly applied only by describing the reasoning that was gone through.  However, both of these standards are sufficiently indeterminate that you can justify almost any generally plausible result under either theory.  In fact, the two theories often collapse into each other.

Furthermore, if there's one thing that's true about courts, they do not want to take jurisdiction over these questions, and they have repeatedly rejected opportunities to supervise this process.

Now where does that leave us?  Well, in the law what we do if substantive standards can't be found to resolve a question is we say, let us try to find some procedure that we can use that will tend to produce generally-satisfactory results in as many cases as possible.  When substance fails, we look to procedure.  That is one technique we can use.

Another technique we could use, and this is one that bioethicists and presidential commissions rarely use, but seems to me to be quite sensible, which is to ask patients in general how they would like things to be solved.  We spend a lot of time talking about autonomy, but we always tell people what kind of autonomy they should want and how they should want to use it.

If you go around and ask human beings how they want these decisions to be made, they do not tell you that what they want is autonomy, and they don't even feel in anything like the way that you would suppose that what's important is the decision they would have made.  In fact, there are a couple of very interesting studies in which patients are told, "Imagine you have the ideal living will that perfectly expresses your preferences, and suppose that some person appointed by the law were your surrogate, not necessarily the person you would have chosen, but the person appointed by the law to be your surrogate, and the surrogate wants to do something different.  Would you object?"  And 54 percent of the people said that, even in that situation, they would not object, that they would want their decision to be overridden, not least because they say, "Well, how do I know what's going to happen?  They're there."

Furthermore, patients want not just a reasonable decision based on the current facts; they also want a decision made by people they love and by people who love them.  This is very important to them.

And part of the reason it's very important to them, of course, is because patients are non-autonomous in another sense.  When courts talk and bioethicists talk about autonomy, what they tend to talk about are the interests of the patients.  What patients tend to talk about are the interests of their families.  Patients are, obviously, very concerned with how the decisions that are made for them will affect their families, and that's one reason that they want their families to be involved in these decisions.

So if we ask patients what they want, we get an answer that is much more tolerant of a best interest kind of decision as long as it is made by the right kinds of people, made, in other words, by their families.

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 treatments.

These studies suggest that over the space of a very short time, for most patients as little as 24 hours, that decision is made.  Now the interesting question, of course, is whether these are good decisions, and, of course, the problem is we have no way of evaluating the decisions because we don't know what good is.

But when you ask the families who went through this process whether they are contented with the decisions that they have made, the answer is yes.  They were not happy with the decision because the decision is an unhappy decision, but they felt that they had gone through a useful process; they had tried to do the best; they had tried to do everything they could for the patient and to get as much information as they could, and that they had reached a decision which they could live with.

What they're unhappy about is what bioethicists tend not to care about.  It's much more commonplace and quotidian kinds of things.  Oddly enough, that's what competent patients making contemporary decisions care about much more than their autonomy.

They want, of course, competent medical care.  They also want to be treated kindly, solicitously.  That is what they often feel they don't get, and that's what wounds them much more than the kinds of denials of autonomy that bioethicists find themselves concerned with.

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 autonomy.

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 them.

We regularly hire people to work for us.  In fact, there is a quite respectable theory of political representation that says the job of a representative is not to do exactly what he is told, but rather to exercise his judgment on your behalf.  It is associated with Edmund Burke, of course, and he famously wrote to the people who had elected him, "Your representative owes you not his industry only, but his judgment and he betrays it instead of serving you if he sacrifices it to your opinion."

Now I've taken up more time than I expected to, and I've learned the best way not to go over your allotted time is simply to stop.  I will do that after saying one more thing that I did promise to say, and that's to talk very briefly about why your predecessors in interest, why so many bioethicists have produced so many programs that work so very badly.

I think there are many answers, all of which I will be happy to supply you with, but two I would like to leave you with.  The first is that they were in the grip of an ideology so strong to which they were so deeply wedded, which worked in such absolutist terms that it was all they could think about; their allegiance to the principle of autonomy was so great that it was all they could think about.

Second, as Clark Gable said as he walked out the door, "Frankly, my dear, I don't give a damn," was pretty much the attitude of these entities, commissions and bioethicists, to empirical questions, to the way world works.  They did not actually stop to think about whether what they were producing was going to produce the kinds of changes in the world that they wanted.

They did not ask, ever, whether patients wanted to be made autonomous in the ways that the bioethicists proposed to make them autonomous.  They did not ask how people actually go about making decisions.  They did not ask why things are the way they are.  Things are the way they are not necessarily for good reasons, but usually for real reasons.  If you want to change the world, you have to ask why it operates the way that it does.

They believed that their principle could produce programs that would work, and they were wrong.


CHAIRMAN KASS:  This was, to say the least, not a disappointment in expectations.  Thank you very, very much for the lovely talk, very stimulating.

Jim Wilson, who is the Council's self-appointed most empirical member, has the floor.

PROF. WILSON:  I appreciate, Carl, in your wonderful testimony you have limited your comments to lawyer and physicians and did not include economists, all of whom have said there would be serious agency problems such that the family wishing to inherit the ill person's inheritance would vote for a preemptive withholding of care.  The economists get this wrong, as they get many other things wrong.

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 decisions.

Now assisted suicides, euthanasia, the answer is, yes, that is, that it's not so clear that the process I'm describing is so different from what is tolerated in those circumstances, and the reasons that I distinguish between the two, I think that legalizing assisted suicide is a mistake, has to do with the need to draw an arbitrary line someplace between always treat all the time in every way and the increasingly anarchic rule that a place like Holland seems to 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 deliberate.

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 matter.

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, Gil?

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 week?"

I'm not sure I said that very well, but two questions:  one about the process generalized when you don't face an immediate end-of-life question, and, second, do you have any sort of substantive comments about the kind of discretion that families should have?  Would this Council be well advised to consider setting some limits or trying to articulate some limits or is this really a question of you simply have to judge to prudence, to loving prudence, on the spot?

PROF. SCHNEIDER:  It seems to me that what I have said about, as you correctly point out, end-of-life decisions applies to more ordinary, more prolonged kinds of situations.  At least important differences do not occur to me.  In fact, part of what I'm trying to do is to allow for a broader range of interests to be accommodated than are accommodated when you start setting standards.

It is one of the mysteries of bioethics why the patient's interests are the only interests that are supposed to be taken into account in making medical decisions when there are so many other people who are at interest.  Here, of course, the kind of situation you're hypothesizing is one where, by and large, families have been spending a lot of time taking care of the patient and have genuine interests that cannot be accommodated by the law and by legal standards and by formal standards, but that can be accommodated by more 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 set up.

I have to say I can't imagine how you can usefully write a set of standards that will apply very well here, partly for the kinds of reasons I was suggesting beforehand.  You really have to know what the range of situations is, and you don't.

So quite apart from the difficulty of generalizing, you've got to have more data than you've got.  What I would do at this point is what the lawyer in me suggests, which is to rely on a more common-law process.

Things have moved very fast in this area.  Standards have changed very quickly.  It's not as though people aren't thinking about this and aren't responding.

I would, in the absence of information that some things are going seriously wrong more frequently than is tolerable, I would wait to see how standards develop informally and what kinds of situations recur and what sorts of rules seem to be working out well.

CHAIRMAN KASS:  Gil Meilaender.

PROF. MEILAENDER:  There was so much that seems to me wise in what you said, and so in a way I would like to just leave it alone, but I wonder if I can just press you to comment on a couple of different things.  They cut in different ways.  They don't cut in just one way.

First of all, you said one of the reasons you thought that bioethics and predecessor commissions, and so forth, have gone wrong here is that they were in the grip of an ideology about autonomy, and I do not disagree with that.  I agree with it, in fact.

But one might argue that the ideology was necessary in the face of kind of a long tradition of medical paternalism, and so forth.  I mean that's sort of a standard answer.

I just wonder, I would be interested to know whether you think there's anything to that standard answer, and that in a way that was a correction to which you're now providing a correction, and so forth.  That's one kind of question.

The other one in a way is related to these previous questions about boundaries and standards.  Just, again, not so much asking you to develop a whole set of standards, I take what you say about the difficulty of that.  I'm just curious to know what you would say about a few sorts of cases in terms of whether we can set 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 mind.

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 treatment.

So one of the problems with the whole autonomy device is that it has incorporated these kinds of implicit, substantive goals that are thought to be promoted by this strong version of autonomy.

Mastectomies, Jay Katz' book on The Silent World of Doctor and Patient essentially says, and it's a wonderful book that you should all read if you haven't, essentially says one reason we want patients to have autonomy is because doctors were performing too many mastectomies.

So I think a lot goes on in the way of attempts to change particular aspects of medicine that seem to be promoted by promoting a strong version of autonomy.  I think that one thing that it would be wise to do is to try to check up on what sorts of assumptions you're making about what is actually happening and what effect a stronger version of autonomy might have.

The other thing I want to say about that is it is wrong to think that doctors, and anybody else, will only change their behavior if the law tells them to or if bioethics tells them to.  People are all, we're all affected by the stronger movements in our culture, and one of those movements is you don't make decisions for other people.  In fact, one of them is it's wrong of other people to ask me to make decisions for them.

Doctors, I think, insofar as they've changed their behavior, have done it for lots of reasons that would have applied even had there been no exaggerated version of autonomism.

The second question was about whether there aren't situations in which I would begin to draw lines.  The answer is yes, but not a priori.  If I were you, I would not set out to say where should the lines be drawn.

I think that the situations that you have described are exactly the kinds of situations where you should proceed cautiously and incrementally in the common-law way that I've described, and when one of these cases actually arrives, you can look at it in some of its actual facts and make a more intelligent decision than you can make by reasoning about it.

I would be inclined to want to intervene in your first case and not in your second case.

CHAIRMAN KASS:  Gil, do you want to follow up?

Well, let me pursue this last as well.  Again, I don't want to steal a march on this afternoon's discussion, but precisely because people, the culture believes that we should make our own decisions and that it would be wrong, many people believe it would be wrong to place such burdens on others, and we have had a discussion of a paper of Gil's at a previous meeting on this subject, there is a certain kind of pretense that there aren't substantive considerations that actually enter into either the substituted judgment or to the best interest standards when applied.

It seems to me one of the concerns is we have in a way, we have, I suppose — I was going to propose two polar choices, and I think you're probably suggesting that there really is a third.  But what I was starting to say was that you've got two choices.  You can either pretend that the situation is good if the process is good and we don't pay attention to the substance.  If everybody is sort of comfortable, we've gone through this, that that's the best to hope for, and we kid ourselves in thinking that due process is right conduct in these matters.

The alternative is to make explicit the fact that there are, in fact, substantive decisions that are being made about when a life is or is not worth living, and that perhaps less mischief were done if we sort of owned up to that fact, and then tried to set certain kinds of boundary conditions that would hem in discretion not only against undertreatment, but also against certain kinds of overtreatment and, of course, against deliberate killing.

So I think maybe you're suggesting that we recognize that best interest standards should operate; they are least dangerous when nobody tells you what they should be, and you allow the people on the spot to conscientiously worry this through, providing you might say, well, no direct killing, but after that who's to say?

PROF. SCHNEIDER:  No.  No, that's not exactly what I'm saying.  I'm saying that you may very well, as you begin to see cases in which rather mildly retarded people, children, are being allowed to die when everybody else would be allowed to live — in fact, those are cases where there are actually legal rules — that as those develop, that then you say this far and no further, but you don't try to sit down in advance and imagine what circumstances you would permit and what circumstances you wouldn't permit, partly because I think these cases are, as lawyers say, very fact-intensive; that they will look very different depending on rather mild changes in a whole lot of different factors.

It's the same problem as the problem of the planned economy; you just can't anticipate all of those things in advance.

CHAIRMAN KASS:  Dan and then Paul

DR. FOSTER:  I can't speak for all doctors at all in these issues, and I know a lot of doctors, but one of the things that has not come up here in this concern about doctors and patients and families making decisions is this:  that very often, when a serious illness comes up and there are options, whether it's prostate carcinoma or something, almost always the family in loving asks me this question:  What would you do if this was your mother?  Or what would you do if this was your son?  Or what would you do if this was your 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."


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 with.

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 in mind.

But you're quite right that this extremely valuable and possibly extraordinarily illuminating experiment that might answer the kinds of questions that we were discussing will be useless if you can't get the data.

DR. McHUGH:  It's a hell of a laboratory where they won't let you look at the data.

PROF. SCHNEIDER:  Then it's not an experiment.

DR. McHUGH:  No, that's right.

CHAIRMAN KASS:  Thank you very much.

PROF. SCHNEIDER:  Thank you.

CHAIRMAN KASS:  Thanks to both of you for really a wonderful morning.


We've run over a bit.  We were supposed to reconvene at 2:00.  Does anybody know convenient places where people could grab lunch?  There aren't any in this building.

PROF. MEILAENDER:  There's a Burger King not far away.

CHAIRMAN KASS:  We'll meet again at two o'clock.

(Whereupon, the foregoing matter went off the record for lunch at 12:36 p.m. and went back on the record at 2:05 p.m.)

  - The President's Council on Bioethics -  
Home Site Map Disclaimers Privacy Notice Accessibility NBAC HHS