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Thursday, June 26, 2008


Session 2: Ethical Questions in the Reform of Health and Medical Care

Remarks by the Chairman


CHAIRMAN PELLEGRINO: Thank you all for reappearing on time, Council members. This morning we're going to pick up a discussion the Council has been in the process of listening to, going through, thinking about for about a year and a half from a variety of different experts in the field generally proposing some system or another for the solution of the problem — or let us say, the question that has had increasing attention in the past year and certainly will be one of the prime domestic issues in the new administration, unless we're vastly wrong.

My task this morning is not to bring you a revelation or a series of tablets from the mount, but rather to open up the discussion and once again ask you, as you did so well in this morning's discussion, your comments, your directions on how we should go.

I have two fundamental questions to put before you and then a little bit of an introduction. The two questions we'd like to have you address are: should we pursue this subject further? And if we do so, how can the Council, given its charter and its general direction up to this point, best contribute to what is a very, very complicated and at times a vexed debate?

Up to this point I think — the impression I get — and I may be wrong — is that most Council members do not have a strong desire to get into the middle of the discussion about which program or remedy is the better or the best, to decide on one or the other. My guess would be that the opportunity to come to agreement on that question would be extraordinarily difficult and may well be beyond the expertise of some of us, including myself, certainly.

But the other way in which we could contribute is one, I think, that fits into our charter. What are the ethical issues, if any — because some doubt that there are such. What are the ethical issues of importance to public policy — in a sense before those policies are made, at least concurrently with them, and important, certainly, once a program is decided upon in how we evaluate that program from the point of view of its end and its purpose? [How do we determine] which is to be of use and help to the people of the United States, particularly those who lack easy access at the present time, those who are ill and aren't getting care? …{ I]n a way then, we'll be talking about two things, although everybody puts them together — medical care, which in a way is in the category rescue operations, human beings suffering, needing our help and, in addition to that, of course, health care, which is more a question of cultivating health, improving quality of life, and adding preventative medicine to the roster of things that should be supported in one way or another.

The arguments have always vacillated back and forth from the point of view of whether government, private mechanisms, or some combination thereof is best. And I would say most of the programs presented to us today fall in one of those three categories.

I would like to say a few words about what I think can be our contribution as an ethics Council, and that is to examine what the ethical issues are or would be, whether we think there are any, how we think they should be phrased, in what order, and so on.

I invite your input as you have provided it so well this morning so that those who are preparing this particular document for your consideration can get guidance. What has been done is a first part of such an approach, and that is providing the background information, reviewing a little bit of the history and something of the content of the various proposals. This in response to a request that Paul McHugh made some meetings ago to get a better grasp of what the debate is all about. And I hope I've said it correctly, Paul.

And we thought that was an important question. So we believe the first part does some of that. You have received that and already have it in your hands.

We plan to move in the following way: to take what you will be saying today, to roll it into the second part, which is: are there ethical issues and can this Council contribute in a constructive way, not by issuing apodictic statements about right and wrong, good and bad, but examining the questions of right and wrong, good and bad as they come out of a new program from this old program so that the public will have some guidance in what our issues may be. That clearly and simply is a proposal of what we'll be doing.

If I can belabor your patience just a few moments more — and I do mean a few moments because the new system of keeping your finger on the pedal while you're talking the may exhaust my energy requirements and all my phosphorylation processes may not be as efficient as they were 88 years ago. But in any case, there's enough left to keep the finger going for a little while.

What I'd like to do is list for you, if I might, again not to be included in any report unless they're kinds of things you think are useful or worthwhile, but the questions are most often posted and presented to me when I discuss this issue. I make no apologies. The reasons I get these so-called ethical questions — and I think they are ethical questions — is because I have a tendency to say that what we have never discussed in the 100-year debate over health care and medical care — it's 100 years — 1915, the American Association for Labor Legislation made its first proposal of an insurance system, and it was rejected roundly by objections from the AMA, objections from labor, from business interests, and so on.

Since then — and this is the subject of this morning; therefore, I can only mention it — there have been, as you know, oscillations between these various mechanisms, but I don't want to get into the mechanisms. But in each case there have been ethical questions. I've raised them, and I'm not going to give you a speech or exhortation on the way you should go.

I think one of the first questions — and these are the ones that were presented to me, remember, now. It's an unofficial survey with absolutely no statistical power, I assure you. But it does impel me to think about it.

First, why is it an ethical issue? Many, many people think it is primarily an economic issue, a sociological issue, a partisan issue, but I think primarily it can be for some an ethical issue. Why? For the very simple reason that it deals with human beings and what happens to human beings by decisions made by those… who make policy.

What's the impact on human beings? And when you're talking about something that needs to be financed one way or another and you talk about the kinds of things that are being proposed, you're dealing with conflicts of interest — conflicts of interest between those who are ill and desperately need help and those, on the other hand, who are not in that state and who are in a better state financially and so on, and for them it's a non-existent problem.

But if a policy steps into this and attempts to manipulate a little in the direction in the one or the other, there's a conflict of interest. Human beings — some human beings are being asked to make a sacrifice for other human beings.

I'm not here to discuss how one looks at this ethically, but rather [to state that] it is an ethical [issue]. In my own opinion, [reflection on] the ethical issues ought to precede the economic and political science prestidigitation for the new program, precede not in the sense of saying this is the better mechanism, that's a scientific question ( if economics is a science and many believe it is), or [a question of] sociology. That's a question which the ethicist doesn't look at.

The ethicist does look at the impact, the effect of what is a scientific decision on human beings in the vulnerable state of illness or in the vulnerable state of being on the margin of society or whatever it happens to be. Notice we're not talking here at the moment about people who are able to take care of themselves.

The second question ethically is, who is responsible for one's health? Many would hold very strenuously, it's the individual. Why does society or anyone else have to worry about that. And others on the other side would say, no, it's in the interests of the common good to have people who are ill and not able to flourish or not able to participate or on the margin. It reflects something about the kind of society.

Those are ethical questions. I'm not answering those questions, but the questions were posed to me, which I freely answer when I'm debating it. I'm not doing that now.

Another question is if there is an ethical issue, then how does it relate to the economic question, because obviously this is a matter of economic science and some would say, well, the ethical consideration should judge, evaluate the proposal and therefore the evaluation of the proposal is not just scientific. It's not just the question of how it works, but does it achieve its end — the improvement of the health of those who need it, rescue operation, or improves it for those who are not ill at the present time.

So I think without going any further, and I can do more, there are ethical questions in the minds of many people, and therefore it is not something that can be simply brushed away. In that argument there comes a serious question of whether or not health care should be treated as a commodity — that is to say, that its place, its quality, should be left to the operations of the free market.

Some people would say, yes, and those, and there are many of them, whose own interests would be violated by some program that did not rest on privatization. And so another ethical issue you have, as I said earlier, is a conflict of obligations and a conflict self-interest with something that transcends self-interest. These are ethical questions. That's all I'm trying to establish. Is it a commodity, or if it isn't, what kind of an entity is it?

Is medical knowledge a proprietary instrument that the doctor owns or the institution owns. Can he therefore — or she therefore — distribute it as he or she wishes. We have those who say that that is the case, that no one can say how we should distribute our capacity and our knowledge.

There are others who say, "Oh, no, wait a minute. Where did you get this medical knowledge? Oh, we know you paid your medical school tuition, but you dipped into 3,000 years of information. Those of us who are clinicians, like myself, have drawn on clinical observations of 3,000 years old, perhaps older than that.

We have, by the way, altered them in the light of certain new developments, but the point is, we have access to those developments, and most of those who paid for them came out of public funds. The NIH has done a beautiful job of philanthropy. They are not funds they themselves have invested to get a return.

So save your comments, Bill. We'll be glad to hear them later.

How, therefore, can we look at possession and proprietorship of medical knowledge. Am I my brother's keeper? someone has asked. Even my foolish brother? Don't we do harm to people by helping them in those circumstances? Don't we inhibit self-reliance, don't we reward sloppy planning, et cetera, et cetera. Those questions arise. They're ethical questions.

What kind of a society do we want to be? Do the values that are reflected in the way we have organized and deliver this element of the flourishing of human beings, namely their capacity to function and be free as possible, obviously with the limitations of our mortality. And what can we do to help under those circumstances? Are we emboldened to do so, and does the way we handle it reflect on a society that in some ways has closed out an aspect of human existence and humanity itself.

By what criteria, can we study and examine the proposed programs? And we'll hear about some this afternoon again. We've heard many, as I said, in a year and a half. One way surely is their efficiency, their productivity, their cost, their value, but another one is does it do the job? Does it achieve what we're trying to achieve with it? Is it contrary to or enhancing the well-being of human beings?

Is health and medical care an obligation for society? What is a good society? You know, when you look for a definition of common good in most contemporary bioethics texts, you find very, very little. It's an ancient concept. It doesn't get much attention.

But think about that. Are we not all in some sense diminished — an ethical question. Of course, all of these ethical questions, like the ones you discussed this morning, have an empirical foundation and any talk about ethics needs to be secure in the empirical foundation.

I have to repeat over and over and over again in my teaching of bedside ethics, do you have the facts straight before we start talking about what's right and wrong, good and bad. And I think there's a paucity of facts that are irrelevant to the ethical issues.

Well, I could go on and on. You can see the drift of my questions. I simply wanted to ask you to think about the ethical questions. Are there ethical questions? What are some of those ethical questions? And get your input for the members of the staff who will be drafting the second half of the report, the first half of which you've already received. And we urge you, each of you, to write, comment here, of course. We only have a short period of time, but write to us your impression of it. You are citizens of the United States, too. How do you see it?

Let me say that this has never appeared, really, in the public debate in 100 years. Yes, there have been efforts here and there, and I think — this will be my closing statement. I think that this Council, in keeping with its charter to examine the ethical issues in public policy, does have a responsibility to look at this one. I stand to be overruled, obviously, but I believe that and I think that we could make a contribution. Just as in your last discussion, not the final, absolute, total answer to everything, but rather what is the state of the question now.

No matter whether you think it's an ethical issue or not, there are enough people who are asking these questions, believe me. I'm besieged by them — enough people who would like some guidance in what is the state of the questions, what are the pros and the cons. And that leads me to a final footnote.

My efforts since becoming chairman have been to draw from you what your thoughts are. And I've always hesitated to say what I think because I think it should be a reflection of what the group looks at and thinks, and they've been tremendously helpful.

But at this point I thought I'd interject just a little bit of a — what we call in physiology, the vis a tergo — forgive me for the Latin — the force from behind. We're talking about the pumping action of the heart that pushes the blood throughout the body. And I think the ethics may be the vis a tergo. Thank you.

Carl, you look like you're ready.

DR. SCHNEIDER: After that genuinely inspiring introduction, to have nobody say anything would be too horrible. Let me just start by asking a question that I've asked before and don't really feel that I've understood the answer to. For whom are we writing?

I sometimes think I'm the only person in America who has actually read many of the reports of the Councils that preceded us. It's a long, hard slog, and I think there are very few sophisticated Americans who will have read any of those reports.

We keep saying we're speaking to the American people and helping them to understand important questions. It sort of reminds me of what somebody said to Gibbon — "Scribble, scribble, scribble, another great fat book, eh, Mr. Gibbon " Who is actually going to read these things?

CHAIRMAN PELLEGRINO: Well, Carl, I think that I happen to have a strong belief in the fact that if one addresses issues with clarity and brevity, not from the point of view of saying "This is what you must do, but here are the issues you ought think about," — I think a lot of people read those kinds of things.

And I think our dignity report tried to raise that question to the dissatisfaction of some and the satisfaction of others, and that's the way it is. And I think when you complete the documents you were talking about this morning on something which is a reality and is moving along, there's no question there's going to mass screening, they will have a basis for thinking about it.

Now, whether the people who read all the newspapers or see certain TV shows will read it, I don't know, but I do think thinking people who have an opportunity to influence the communities in which they live would read it. I'm surprised at how many people do tell me they have read the reports of the Council, the previous reports, and find them helpful.

So my answer is I don't have numbers to give you, and the other side of it, what is the fate of any government report? People have a certain allergy, right? There are endless, infinite numbers of shelves with dusty books on them, and we may join that generation.

But I think that we can't give up the effort of trying to influence, and I think the answer lies in how we write them and clarity and order that we move. I guess not many people agree with me, but …I do think that people appreciate having it laid out for them.

I don't know how many times I've been told the stem cell volume was an extremely valuable volume even though many people disagreed with it, because there was a laying out of the issues, and to the credit of the Council, many of you put in your individual personal communications.

I'd like to see more of that, and that's why I'm inviting you in the summer to give us a little of your time and write your perspective. Just pick one of those questions or better questions that you can phrase than I have phrased here and say something about it. Is it an ethical issue? No, it isn't. Is that a fair question? No, that's stupid. Say it. But please don't say it that way. I haven't answered your question, Carl, but that's my commentary on it.

Gil?

PROF. MEILAENDER: As you know, my general comment from the start has been one of some skepticism about this topic. I've described it as a black hole, and if you get into it, you never get out. And I think that — I'm still not persuaded that that may not be the case.

But if we're thinking about how to proceed and you want these ethical questions emphasized, then it seems to me that the Council as Council needs to do something more. The notion that we can — I mean, what we have in the draft here is — I think there's useful information there.

CHAIRMAN PELLEGRINO: That's the background. Useful background?

PROF. MEILAENDER: Yes. And I think particularly — what's particularly useful about it is that it makes clear that there's not, in fact, one problem. There are multiple problems and, indeed, to solve one may be to exacerbate another. And, I mean, I think that's a very useful thing to see.

But if then one says there are ethical questions that arise out of this, why don't each of you write something about it. In the first place, many of us will not have time. Some of us write that sort of thing more than others do. I'm just not sure that's helpful.

I think it's helpful — it's been useful in some of our previous reports when there have been personal statements appended, but those are personal statements commenting on or even occasionally spinning what the Council report itself has had to say. And so it seems to me that we as a body ought to try to say something about a few of these questions.

I mean, you know, the question about whether there's really a duty to — obviously there can't be a duty to make people healthy, but there might be a duty to provide medical care or something like that and that relates to the issue of personal responsibility for health care.

It just seems to me that it would work — if we're going to proceed — and my previous reservations are still sort of in force, but if we're going to proceed, then I think we as a Council would need to try to produce something to which then different people could react more briefly or off of which they could play and so forth.

I have real doubts about whether it's going to work simply to provide the kind of prolegomena information that we've got here and then to say, okay, go ahead and write about whatever you want. So that would be my reaction to the plan as you've sketched it out right now.

CHAIRMAN PELLEGRINO: Well, I very much agree with it, Gil. I think it's — said in another way, I think — correct me if I'm wrong — what I was saying, namely that we ought to look at those questions and lay some of them out. I wasn't suggesting that we would abandon what we're doing in getting something ready for you for September, but rather that we would be enormously helped if those of you who have thoughts, just as you have, would send us that material and we'd try to incorporate it, as we've done in other reports. Generally we put them out to you, you've made responses to us, and we've tried to incorporate them — not all of them.

So I have nothing but appreciation for the way you've suggested it. And I know you and I have talked about it, that you have a bit of a skepticism, which I think is justified. That's why I said they are questions, rather than apodictic statements at the moment.

I have Ben Carson next and then Floyd Bloom and Rebecca.

DR. CARSON: This is a Council on bioethics, and the “bio” part means life. The ethics part means right and wrong. And all the other things that we talk about — stem cells, cloning, organ donation — you know, you could go right down the list. What does it all point to? It points to life. It points to providing quality of life. It points to providing longevity.

And ultimately the most important thing that a person has is their life. And a subset of that is their health. So the issue of whether we should be talking about it or not seems kind of silly to me. I mean, obviously, it's the most important thing. It's the pinnacle in terms of who we are as a society — the most important thing we have.

Now, having said that, many of the issues that you raised obviously need to be discussed. The issue of personal responsibility, I, as a physician, find that to be almost an irrelevant topic, and I'll tell you why. There are very few physicians or health care providers who are going to walk away from somebody who's in need because they were irresponsible.

You can talk about it. You can say, "Yeah, well, they didn't do this, they didn't that, so they" — but nobody is going to walk away from them. And we just need to factor that into any kinds of recommendations or thoughts that are made.

I had a patient yesterday, and there were some insurance issues. They were from out of state and the administrators and the people were saying, "Well, you know, I'm sorry, but the surgery is going to have to be canceled unless you can come up with a certain amount of money."

And so the mother was going to go and draw out money from the child's educational fund in order to pay for the operation. The father had died the year previously. They were by no means wealthy people. And when I heard about that, you know, I just said, "Absolutely not. Tell that mother to put that money back. If I have to do the operation for free, I will."

But that's the way most physicians think, quite frankly. And therefore that's why I say it's an irrelevant issue and we have to come up with mechanisms that take into account the fact that we are a compassionate society.

It's one of the things that insurance companies have capitalized upon. They recognize that physicians are a soft touch. They realize that they're not going to deny people care regardless of what the situation is.

So I think it's incumbent upon lots of different organizations and bodies to also find a way to protect the health care providers. They need to be protected, because they're not going to protect themselves. And if they don't protect themselves, eventually the whole system begins to crumble.

If we develop the same kinds of systems that many of the other nations have developed, we will reap the same kinds of rewards or problems that they have gotten. We have the best health care in the world, and yet we rank number 37. We have some of the worst situations in the world. The question is how do we get rid of the bad while maintaining the good.

CHAIRMAN PELLEGRINO: Thank you very much, Ben. I have Floyd Bloom, and then I have Rebecca Dresser, and I have Gil Meilaender. Bill, would you care to comment?

DR. HURLBUT: I'll wait.

DR. BLOOM: My comment is not should we take this issue up, but what we say about it and do we have the time to make an effective statement early enough in the terms of the next congress and president. And if our budget and our meeting cycle is such that we can't really do a bang-up job, I'd rather not take it up.

But my own tendency is that we should take it up and we should accelerate our schedule of participation in a way that we get our inputs to the writers and express the ethical concerns that you raise.

In my own mind I have difficulty separating the economic, social, and political aspects of what I see to be the problem. And I can't thank you enough for illuminating the ethical issues of the questions that lead me to the economic, social, and political issues. But what are we going to say, and is it enough just to confront the complexity.

I'm torn between the advice given to me as a medical student, which is — a medical student's tendency is when faced with a crisis to do something right away. And the resident who knows says, "Don't do something. Stand there and think about it."

And we've been thinking about this problem, as you say, for 100 years, and we haven't come up with an effective solution. So if we take it up — and I'm certainly in favor of taking it up — but I want us to be able to provide a product that would have some contribution to an ultimate downstream effective achievement of the goals as you enunciated them.

And so if we do it, I think we need to commit ourselves to participating much more effectively. You treat us very leisurely at this meeting. We have long lunch breaks and we have a long time between meetings, but I think this is potentially the most important thing we will take up. And therefore I would rather see us meet more often this year to get something out before the next president takes office.

CHAIRMAN PELLEGRINO: Thank you very much, Floyd. I think that is a very helpful comment and continuing along the way we hoped to go. In other words, we want to hear what you're saying. We'll get something back. And I couldn't agree more that the greatest damage we could do to any such inquiry would be to do it in a sloppy way or to do it from the point of view a polemical approach, or to do it from the point of view of self-righteousness.

Next I have Rebecca Dresser.

PROF. DRESSER: I think that what you've done so far in the staff's paper is very useful groundwork. The part 3 is the beginning of getting into the ethics. I think we could do two things. I think one we can do for sure. The other I'm not sure we can do, but maybe.

One thing is just to point out to interested people, some of whom are from the ethics community, the policy community, but some who are just people who want to understand more about this very serious problem — is the ethical questions and concepts that bear on this problem. And you've done that to some extent.

It seems to me after this meeting we're going to have some more speakers, some of whom will talk about a right to health care, one of whom will talk about having a religious basis to providing people in our community with health care, and perhaps trying to draw from us more about these are the ethical concepts and the ethical questions drawing from us. There could be a next step. So this part is more analysis — here's why this is relevant ethically and here is what is relevant ethically.

Then the second step would be and here's where we should go with it. And I can't say whether we can do that yet. I would want to see more about what is there in the first step. In terms of possible considerations to add that aren't in here yet — at least directly — there is this issue of is there a tradeoff that we have to make between innovation and equity, so that in order to have more equity, do we have to devote more resources to providing more people with adequate care and perhaps losing some in the innovation part.

I'm not sure whether that tradeoff is something that would have to occur, but it seems to me we need to talk about that and this whole issue of priorities and biomedical research, what kinds of research should have the highest priority, are there changes or revisions that need to be made there.

I have a recollection that Floyd, when you were president of AAAS made a really good speech on that — at least a speech I liked a lot about that. So that would be, I think, something to add.

Another is how the current system affects the quality of care even of well-off people. So this is mentioned a little bit about how it's so difficult to get an appointment right away. Another illustration is that even if you're well-off, on the weekends you're not well-off. So you have to go to the emergency room. And I just have heard so many stories about fifteen hours in the emergency room. Even — I never had it as a cancer patient, but other people I know with cancer who have spent that time.

And so it seems to me important to point out — I mean, one question is do we who are well-off — should we give so that others can have more benefit, which I think we should, but another is to point out how even we who are well-off are harmed by this situation.

And then a third point or concept to add is the effect that the current system is having on the morale of physicians and how fewer and fewer people are going into primary care because that seems to be the most difficult area of practice in our system.

And one ethical goal, it seems to me, should be to try to have a health care system where the physician/patient relationship, while not totally wonderful all the time, should be something that for both parties is sort of affirming and keeps the nature of it is — as sort of the beneficent basis that we always have though about medicine being. So that seems to me an important component to mention.

CHAIRMAN PELLEGRINO: Thank you very, very much, Rebecca. Next I have Gilbert Meilaender.

PROF. MEILAENDER: I don't know exactly what you envision the staff providing before September, but I hope we'll think about not ethics in a narrow sense, but in a sort of broader sense and some assumptions that work, because what you do with various kinds of ethical principles depends on a whole range of background beliefs that you carry along with you.

And this thought was triggered by what Ben said before, that the most important thing is life, which I think is clearly wrong, and I don't think Ben believes that for a moment himself, in fact. And at the very least there are some other goods we need think about — your freedom, your virtue, your honor, your attachments. None of these is more important than life?

Well, I think they may be on any number of occasions. So we need to — I mean, a fundamental question is exactly how important a good is life or health. And there are just assumptions at work in these discussions often about that that need examination.

So, you know, if we're going to press an ethical conversation, I think we need to get to those background beliefs somehow. We're not likely to agree entirely about them. They may be hard to really unpack in some ways, but I think if you don't do it, you're just spinning your wheels.

CHAIRMAN PELLEGRINO: I agree with you, Gil, and I also agree with Ben.

PROF. MEILAENDER: It's not possible to agree with both of us.

DR. CARSON: I just want to say that none of things that Gil mentioned are important if you're not alive.

PROF. MEILAENDER: And many of them are things that you're willing to die for.

CHAIRMAN PELLEGRINO: And what I would add to this is that laying out this difference, I would say, and defining what the implications might be in direction A or direction B is the kind of thing I'm thinking of.

Now, I guess I have a solid faith that if you lay them out, the right one will come up on this list. That's the one I think. I'm being facetious here now. I'm being facetious. I think laying them out is very, very important and there are important people on both sides of this issue.

DR. ROWLEY: Well, I just want to make a response to Gil, again saying that if the focus is going to be medical care and health, then some of the issues of honor, et cetera, are not directly involved. They certainly can be indirectly. But we have a different focus, I think, here in an ill child or a sick patient who can't afford adequate medical care in a society that is overall as rich as ours strikes at least some of us as being an immoral situation.

PROF. MEILAENDER: I understand that, of course, but a society that believes that nothing is more important than life will take a certain approach to health care, and it may be precisely that belief at work that has caused some of our problems, in fact.

CHAIRMAN PELLEGRINO: That empowers me to make just a little intercession. I think on this issue one of the things we would want to do, I would think, looking at the ethical issues is understand that there is some deeper metaphysical presupposition, pre-logical, if you will, in the reasoning which calls for a very different decision on what's ethically right or wrong.

But when I say it's an ethical question, I'm really asking for a definition of what the question is from an ethical perspective — that is, a formal, systematic, critical examination of rightness or wrongness of this particular act so that it would not resolve all the questions you've all raised, which are very practical questions, but at least provide public consciousness that it isn't all economics, politics, cost, value, et cetera. That's a major aim of my own.

I now find myself a participant in the discussion, and so I'll try not to abuse my chairmanship. Peter?

PROF. LAWLER: I'm somewhat in sympathy with Gil that the — to me, the ethical issues aren't so obvious, partly because although Janet is right, if you focus on health care, then health care becomes the most important thing. If you focus on life, life becomes the most important thing.

But since we're giving advice to the American government, the American government can't focus on health care in isolation or life in isolation. So let's even say our job is — we have the ethical principle, the best possible health care for everyone. But then Rebecca said if we want to have an affirming patient/doctor relationship, well, that takes time. That's inefficient and that might produce inefficient health care from a purely engineering point of view.

And let's say we need to bring the Bible in as one of our readings, that our government should be based on an Old Testament covenant, and I like the Old Testament, one of the top two testaments and all that. But still all kinds of questions are vague. The Old Testament and the other testament even more so, are all about charity and so may be about the preferential option to the poor and helping the poor out and love. But because the testaments tend to be relatively indifferent to life as the most important thing, especially the newer one, then you end up having an indifference to the development of medical technology that allows us to make people live a very long time.

So the same people who are being charitable all day long, like the Apostles, aren't doing a lot of actual life-saving in a medical sense. So if we're guided by the Bible, there would be a lot of more charity, a lot more concern for the whole human being who is afflicted in so many different ways.

But if we were guided simply by the Bible we might put somewhat less emphasis on the unlimited development of medical technology and all these crises, like the crisis in the shortage of kidneys and so forth.

So if you think about it, I'm all for the Bible, but the Bible — the guidance the Bible gives us is sort of ambiguous because it's not about life at all costs, actually.

CHAIRMAN PELLEGRINO: Thank you. Paul?

DR. MCHUGH: Well, I'm finding this conversation very helpful, and the ideas that we're trying to make clear to each other what is out there and what we are aiming at. Let me back up a little to tell you why I am still confused about the issues in front of us.

I'll put it to you this way that there are aspects of this issue in which we're using the word health care and we really mean illness treatment. Okay? That is, health care is so broad and health is such a universal thing I don't know where the limits might be in working that way.

And, in fact, at my institution I belong to two elements, one across the street from the other — the Public Health School and the medical school.

In the Public Health School, we're interested in working with populations and managing and helping populations. In the medical school we're interested in treating individuals who have a particular illness. Okay? And I wear hats on both sides, and occasionally I get confused about it, but I understand what I'm doing, especially with the government when I'm across the street in the Public Health school.

In public health I believe that we're trying to protect, as well as treat a population. So we work on things like the water system of the city. We work on the issues of immunization. And then we work on certain populations that we believe have illnesses that render them helpless and in need of care, particularly, of course, that includes the mentally ill.

And then when I look at, okay, well, how well has the government done and picked up on the issues of the mentally ill. We have a very checkered record. We began in the 19th century totally committed with such wonderful people as Dorothea Dix who probably did the first social science piece of work in our history, American history, demonstrating that the mentally ill, vulnerable and violent, were all in jails and in other shelters and not getting the care they needed.

And we as a country moved forward and said, "We're going to take care of them." We got overcrowded. In the 1960's we had what I call an unholy alliance between the conservatives who wanted to save money in the mental hospitals and everybody else was worried that maybe the freedom of those poor people were being afflicted, and so we turned them all loose into the streets.

And what did they do, they went into the back alleys and they suffered terribly. And, of course, as well they caused terrible trouble. The Virgina Tech episode was due to the fact that we couldn't figure out as a government what to do with a seriously mentally ill person who was quite dangerous and everybody knew he was dangerous.

So on the other side of the street, there's no question that I'm working with individuals, and just as Ben says, we're not going to turn anybody away who's sick. So whatever kinds of policies that we're going to do and talk about as an ethical group, I would like us to be able to say, perhaps, that we're relating ourselves particularly to illnesses, from the illnesses that the people everybody could agree are helpless and hopeless in their care and needs to have an agency of government and perhaps other eleemosynary groups to help them and care for them down to illnesses in which in we'll expect not only can there be help for the poor, but also for the less poor, that they will collaborate with the services to maintain the hospitals, to maintain the services and the equipment that Ben needs to do his wonderful, wonderful surgery.

I would feel better about the ethical postures that we were taking if we were talking less about health care and more about illness care and defining which illnesses we mean when we call for the resources of the government and the resources of families to provide them.

CHAIRMAN PELLEGRINO: Thank you very much, Paul. I think you might recall that in my quick going over I said one of the questions was to distinguish medical care and health care. One is a rescue.

DR. MCHUGH: I do remember that. I just wanted to speak to my condition.

CHAIRMAN PELLEGRINO: Oh, you just wanted to elaborate, and you did very well, but I just wanted to know, I do agree with that separation. And the point I was leading up to, however, though, is many ethical issues are conflicts of obligations. We may start from believing that we have obligations to both, but when conflicts of obligations occur, we need some priority principle that will enable us to choose in which direction to go. And so, again, I think that's a formal part of an ethical analysis that I would see very, very appropriate, as you pointed out.

Carl and then Ben.

DR. SCHNEIDER: It strikes me as possible that the conversation illustrates the black hole. And one way that might make it possible to stay away from the gravitational force or whatever it is of the black hole would be to ask where we are in the United States today and what the public issue is.

And the public issue, I think, is the question of the great difficulty that a large number of people have in getting basic medical care. That's the question that we've been working on and arguing about for 100 years.

And as I recall, Harry Truman tried it the year that I was born many decades ago, and I think the more that we try to fully elaborate all of the principles that might be involved in thinking about restructuring health care, the more hopeless and black hole-ish things get.

It strikes me as possible that one might say whatever else you do, there is an urgent need to deal with the particular problem of people who simply can't afford even quite basic health care or are given it in such a difficult way that effectively they can't afford it.

It strikes me as possible there might be some even consensus on the social, moral, ethical duty to provide that kind of care. The reality then is that what's going to happen is that the question will be decided by another one of these huge political conflicts in which people with all kinds of beliefs and interests are going to negotiate.

And at that point everybody is going to have to give up valuable things, and I think it stops being possible to say this is really the morally preferable way and the real issue becomes not what would the optimum moral way be, but is there any way that we can convince people that the ethical duty to provide this kind of care is so urgent that you ought to be willing to compromise to find something.

CHAIRMAN PELLEGRINO: That states the issues very, very well and very clearly. You ask the question, you have a moral obligation, now we get to the practical question, how best to bring it about and what are the limitations and what are the problems.

DR. SCHNEIDER: Those are the questions I would avoid. It's just stating a single important principle.

CHAIRMAN PELLEGRINO: Ben.

DR. CARSON: I want to clarify what I was talking about and the basis of it. When I first came to Johns Hopkins decades ago, I was very impressed by some of the types of patients that I saw there — the crown prince of this country and the CEO of this company and the president of this organization, people of enormous accomplishment, people who had written volumes on great intellectual subjects, dying of glioblastomas.

And every single one of them would gladly have given every title and every dollar for a clean bill of health. That's what I'm talking about when I'm talking about, you know, what really becomes important at certain points in time.

And a lot of the things that we talk about are aimed at giving people a clean bill of health or helping them to maintain a clean bill of health, and, therefore, if you can talk about the things that are aimed at a goal, then why not talk about the goal itself.

And how can we provide good health care for everybody, I think is, in fact, a significant moral and ethical issue. We spend more per capita for health care than any other nation in the world and yet we rank significantly down the list in health care. It means that there are some huge problems in the system.

Is it our job to address those and to fix them? No. But I think we could provide some service by pointing out some of the things that are preventing us from being able to reach at least the level of many other industrialized nations in terms of health care distribution when we pay so much more than they do in order to achieve it.

CHAIRMAN PELLEGRINO: Thank you very much, Ben. Right on the point. Anyone else, or have we exhausted the question? Thank you. Peter.

PROF. LAWLER: Dan and Carl sum up the remarks. They didn't get way metaphysical on us. They just took as a given in the spirit of geometry that every American should have access to basic health care, not even exactly as a universal and deep right, but we're spending all this money, we have all this technology, and we should be able to do this. And at that level there is in the country a broad consensus. Both presidential candidates are in favor of doing that. Their plans aren't as different as it first seems and so forth.

And so Carl's criticism amounts to a lack of intensity, that we don't regard this as important enough to just sit down, compromise, try to do as Ben says, to get this done while keeping what is good about our present system. So we need to sit down and get this thing done while preserving as much as we can that is good about our present system.

So there is a consensus in the country, I think, in the need to do it. The country has not gotten together and put down a metaphysical foundation. As a philosopher I hate says, [there is a] kind of “overlapping consensus,” and while this is a good thing to do, and I don't think anyone in this room or any room in Chicago would deny that in some sense we need to get this done.

And the fact that we don't get this done is about — because our present system is a monstrous series of accidents based upon things that are no longer relevant, like employer-based health care and so forth — employer-based insurance and so forth.

So if there's a crisis, it would not be a crisis in metaphysics. It wouldn't be a crisis in resources. It would almost be a crisis in intensity. We don't regard this as urgent enough to get it done fast.

CHAIRMAN PELLEGRINO: Bill, I think I saw an expression that suggested you wanted to speak.

PROF. MEILAENDER: Well, I just don't believe that, Peter. We have all sorts of smart people who themselves, at least, certainly think it's extremely important, thinking about it and working on it, and unable to agree about how to accomplish it. So it just seems to me that, prima facie, it's a little more complicated than that.

PROF. LAWLER: I think there is a rough agreement on the goal, but there is considerable disagreement on need. And one reason there's a disagreement on need is the fact that we don't have facts straight.

PROF. MEILAENDER: There are many goals. And we regard them all as important and what we haven't got the foggiest idea is how to go about trying to achieve them simultaneously.

PROF. LAWLER: But there is an agreement that we shouldn't have a large number of people who are uninsured or incapable of getting insurance and we need to move away from that in some sense. There is massive disagreement on how to do that and what method is — most of these things are prudential matters, actually: How will we achieve this in the best possible way? But if you look at the program of McCain and the program of Obama, the goal is not so different. How to achieve the goal is somewhat different.

PROF. MEILAENDER: But we could achieve that goal overnight if we didn't give any high-tech treatment to people over 70. And there are all sorts of things you could do if you really wanted to accomplish it.

PROF. LAWLER: Yeah, but that's not the goal I'm really talking about. Actually the goal I'm talking about is having everyone have access to insurance, either — and the method most likely [to achieve that] is to … detach insurance from employment, have people buy it who can afford it and have subsidies — tax breaks and subsidies for people who can't afford it.

DR. SCHNEIDER: The political reality of these debates has been that you have groups with interests that have been very insistent on prevailing. Organized medicine has had an extraordinarily powerful effect. Insurance companies have been effective. And people can be convinced — ordinary citizens can be convinced that their interests are very directly at stake.

And so I think Peter is right. The problem is we're asking people to give up things that they want to have and to compromise their own direct personal and economic interests. And we have a system which makes it possible for lots of groups to veto change, certainly in combination. And so I think the intensity of the moral duty is a point worth establishing.

CHAIRMAN PELLEGRINO: I think all of these practical difficulties you're laying out are without doubt part of the discussion. But I suppose whatever comes out of an attempt to describe the ethical issues, if one can raise them in a non-offensive but appealing manner, one really hopes — and I know you practical minded people around the table are going to say the chairman's idiocy is now reconfirmed — but I do think that a well presented moral position does move people.

Now, I'm not a preacher, and I don't have the powers necessary, but I do think and have more faith, I guess, in the American public's capacity to grasp what it means to do some of the things we're doing and go to one of the questions I raised, what it reflects on the kind of nation we are in the way we treat the under-served, those on the margins of society, the very young, the very poor, the very ill. We're not doing a good job of that.

PROF. MEILAENDER: Well, just one more word on behalf of the metaphysics of this. All these people who we're asking to ratchet up their intensity about this problem and understand that we must all give up some things in order to achieve this agreed-upon goal are people who we also seem to think are committed to the principle that they want to live as well as they can for as long as they can. And as long as that fundamental good is at work in the background, you're going to have a very hard goal of persuading us to make these sacrifices when push comes to shove.

CHAIRMAN PELLEGRINO: I think that's a reality, Gil. There's no doubt about it. And I just would like to see a balanced point of view on the other side of it.

PROF. LAWLER: I actually don't completely agree with that in a sense. It is a question whether our country from a political point of view can deviate from the principle that people can live as long as they can and that public policy that actually supports that demand. I would be in favor of a public policy that does limit talk about rights. Rights reside with the individual.

DR. SCHNEIDER: Could I just raise one question that might be —

CHAIRMAN PELLEGRINO: You may.

DR. SCHNEIDER: If the staff has a relatively available way of answering it. How many other countries have managed to reach some accommodation of this problem? How did they do that? How central was metaphysical reasoning in their doing so?

CHAIRMAN PELLEGRINO: There's a question I think the sociologists could answer and the historians better than I could, but I think that an approach to this in a pluralistic society, in a democracy, will mean agreement upon what is an action that we all accept without necessarily sharing the same metaphysical theological foundations.

And the one example that I use about that is the U.N. agreement on the dignity of the human person, the equality of the dignity of every human person, which was based, as you know, on a response to the horrific experience of the holocaust and associated activities. They came together, 30, 40 nations, and signed it.

I think I've mentioned to you that I've been on the International Bioethical Committee of UNESCO where we issued a declaration which again said the first principle of bioethics was the dignity of the human person, which had to be protected, even in the light of human experimentation, et cetera, et cetera, et cetera. I assure you, having been there, the metaphysical din was a very, very highly impressive one. But nonetheless, they agreed on the principle.

I think in this nation we could. Now, I don't know how many of those there would be, how many it would be possible to do, but unless we give the definition, we can't begin to say how about this. And I'd like to quote — and I did in my paper in the Dignity volume — John Keats, who says that you have to feel these things on your pulses.

The poets are the antennae of the race, in my opinion, and I think Keats caught the notion that an axiom wasn't an axiom until you really felt it on your pulses. And I think maybe the reason Ben and I and doctors take the position we see it in the city of Washington. I've lived there 35 years — a neglected population of people who are not — we're not talking about advancement of their health to the state of enhancement. We're talking about daily needs that are unmet and can't be met because they can't pay for it, can't have access to a doctor. What does that mean to the American people about the kind of people we are? That's the question I'm asking.

DR. MCHUGH: I just want to come back in for the defense of the aged. I've been doing this for a long time on this Council, especially whenever we have Daniel Callahan come back and tell us and remind us of how should be watching it.

Medicare was put into place primarily because we began to realize that the people that were the most likely to suffer from neglect and from not having the support that they needed were the elderly. And I'm not here to speak for a system that would begin its rationing by cutting out people my age and older, for one thing.

But then, again, it brings me back to what I was saying before. This is the problem with talking about what amounts to a public health system. As soon as you start thinking in terms of public health, you begin to talk about the issues of rationing. I'm interested in treating illness and the illnesses that are expressed by individuals. I would like to cure them.

I would like to see both the government monies and the family monies distributed appropriately in relationship to illnesses and the experiment from Medicare on that would speak to the particularly vulnerable and might ultimately speak to certain kinds of illnesses that are emergency illnesses and for which families could be totally bankrupt if they weren't supported for them — those could be quite differently related to in a health system — a so-called health or an illness system versus something like the common cold.

And this is where I get exorcised, because the elderly, who I take care of a lot of and belong to, are quickly pushed out once you begin to think such things as, "Now we're spending 90 percent of our health care on people who are over 70" and all of this. I think it's rubbish.

CHAIRMAN PELLEGRINO: You're raising the question of how do we approach those questions, and we need to have some guidelines. And that's what we've been talking about.

DR. MCHUGH: But notice that the reason I'm concerned and making this point about whatever system we have working, as it becomes less and less illness related and more and more public health related, then certain kinds of ideas come up as to how we should practice it. But you and me and Ben and others have to look at the individual right in the eye or across the bed and we have to tell them that we're going to do everything we can to help them because we do not doubt their worthiness for our effort.

CHAIRMAN PELLEGRINO: And the moral responsibility has some relationship to the proximity of the person suffering to the person able to satisfy that. And whenever people talk to me about saving money on this patient so that someone else can, that I haven't seen who is a probable patient, I, as a clinician, have to say I'm sorry, the one presenting is the one I have an obligation to at the moment.

Well, we have had another — leaving my contribution out, but a very, very splendid discussion and it will be reflected back into what we try to do with the staff during the summer, and you will see parts of this or perhaps something that's orderly and able to be looked at in the fall. And thank you very much. It's time to lunch. We reassemble at 2:00.

 

 


  - The President's Council on Bioethics -  
 
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