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Friday, March 13, 2009

Session 5: Beyond Medical Rescue:
Staff Discussion Paper

Council Discussion


CHAIRMAN PELLEGRINO: Good morning. We're starting almost on time. Thank you, gentlemen, ladies. This morning's session is devoted to just one topic, and I will get to that in just a moment, but before we do that I'd like to provide for the record and for the members present an update on our current studies.

The healthcare study, we will have another draft which will go to all of the members of the Council next week. We want very much to know what the Council members think, and we'd like to ask you please to provide us with comments. That's an important document, which way should it go, how should it go. And once we have the reactions we'll look at what the next steps should be, about publication, about modification, about revision, and so on.

DR. HURLBUT: And will there be evidence from what was changed in it, instead of having to read the entire document over?

DR. DAVIS: You'll get a copy of the second draft, which is what you reviewed with your comments in the margins, so you'll see what those of you who weighed in—what you had to say specifically, and then it will be preceded by—a number of you made general comments, so you'll see a summary of those.

And then you'll have a cover memorandum that explains how we went about the business of revision, what comments we incorporated, our arguments about modifying some of the document in light of some of those comments, why we didn't take others, et cetera. So you'll have some explanation of how we got to the third revision.

CHAIRMAN PELLEGRINO: In effect you will have as complete as possible rendition of where we've been, what's happened to the document and where it is now, and that will be the version that we hope you'll make your comments on.

With regard to organ donation, we'll give another chance to weigh in on this topic, which is a large one, and we need again to know—we'd like to bring these to closure, obviously, so we hope that Council members will get to the homework as far as possible so we know where you stand.

I emphasize once again these are Council reports, and therefore we need to know where the Council members stand. We have a lot of comments, and if we need more, we're open to them entirely.

With regard to the meeting we had yesterday on the question of national bioethics commissions, we hadn't envisioned this as a formal report. We'd like, however, to see how many members of the Council would like to make a comment or provide us a little mini paper or maxi paper. But see how many comments we get from the Council members on where you think that ought to go.

And, once again, I think—I personally think that's a contribution we could make. I haven't heard all of that kind of data presented anywhere before, and it could be our final report, not necessarily so. So that's where we are on the current items.

Today we'll be talking about the questions of conscience and futility, but mostly futility, which has been discussed before and came up during our earlier discussions on professional ethics and some of the current problems and the bigger problems.

This morning we're going to look at futility, which is a term with bad connotations, but try to rescind from those, and let's look at the question as a fresh question without the word "futility" floating around as a negative term, which it is for many people.

I've asked Prof. Gómez-Lobo to initiate the discussion, and then I hope Council members will join us in taking a look at the question from three points of view we have in mind. We'd like to know whether there's agreement among us that we can make a contribution by saying something about this question of futility, and that's open.

If there is to be a contribution, what should the thrust be? What should the focus be? What should the epicenter of our comments or our contribution be, if we can make one? And then with reference to those first and second questions, we need a succinct description of the background of this topic.

A document you have summarizes where we are and summarizes what we've heard from our invited guests. Again, here we'd like to know what you think, and today we have the opportunity to do so, and the point of departure will be provided for us by Prof. Gómez-Lobo, but, again, this is an important area for your contribution so we can be guided on the next steps.

Prof. Gómez-Lobo?

PROF. GÓMEZ-LOBO: Thank you. In the first place, I really don't have a formal presentation for once. I would have come in with a—

CHAIRMAN PELLEGRINO: We didn't expect one.

PROF. GÓMEZ-LOBO: First of all, the draft by Joe and Dan I found excellent, and it was particularly valuable for me because I happened to be ill when three of the people who testified were here. It's a little bit like Plato saying that he was ill when Socrates was executed, right? But it is true, and there it may be literary fiction.

My main concern here is—I mean, it's twofold, one with regard to a possible report. My own view is that the topic of conscience and the topic of futility—incidently, I love the word. It's not a word I'm going to shy away from—I think are very intimately connected, and I think conceptually it makes a lot of sense to treat them together. Why? Because the judgment of futility on the part of a physician is logically prior to the judgment of conscience of that same physician when she decides, say, no longer to treat a patient. So the two things are connected.

I don't want to suggest, though, that all judgments of conscience depend on futility. There are many judgments of conscience that are based on other factors. But I do see them as intimately linked. So my own suggestion would be let's discuss them together in a report.

Now, my second concern—this has more to do with what I find here as the testimonies of Dr. Truog and Dr. Rubin, particularly that of Sue Rubin. And it's this: She insists on the claim that judgments of futility are a mixture of factual judgments and value judgments.

I feel very uneasy about that, to be honest with you. Let me give you an analogy. There are people in the criteria of death debate that hold that either the declaration of death is a moral judgment or is a mixture of factual and evaluative judgments.

I think that totally obscures the issue. I would say that death is an event in nature and therefore the determination of death has to be a descriptive judgment. Now, of course, valuative judgments follow from that. One has to decide how one is going to treat a patient if one determines that the patient is dead, and that's different from treating the patient if the patient is still alive.

But I think it's a sheer conceptual confusion to claim that the determination of death is either a mixture of both or is basically evaluative. And you will know the sources much better than I do of this topic. We know who has defended those views.

It seems to me that here we're facing the same problem. Now, I have, of course, no experience whatsoever at the bedside, but I would have to hold that the judgment of futility has to be descriptive, has to be factual. In other words, I imagine it in a simple-minded way as, say, the case in which two rounds of chemotherapy have been given to a patient and then by the fourth one it just doesn't work.

Now, I take it that that's independent of the values of the patient. That's where I really regret not having been here when Sue was here, whom I know from her time at Georgetown. But it seems to me that the way one evaluates the use or nonuse of a therapeutic means is independent of the question of futility.

It may be that objectively something is futile but that for other reasons a patient may request it. That's perfectly reasonable. And there may be a circumstance in which it may be reasonable to comply with that request. But my tendency would be to keep the two cases separate.

In fact, I was going to ask the staff, if you recall it, to give me the example of the two women diagnosed with the same metastatic cancer with identical prognosis and in what way those judgments would differ or did differ in the example. So if it's possible, could you tell me really quickly, Joe, please?

MR. RAHO: Thank you for the question. The first case the woman had significant background with seeing previous family members diagnosed with that exact stage cancer and for that reason chose a less aggressive treatment option, whereas the second woman diagnosed with the same cancer was a fighter. She really wanted to fight this to the end and chose a more aggressive treatment course.

PROF. GÓMEZ-LOBO: Thank you. That makes it very clear to me, and it just confirms my suspicion. The judgment of futility could be exactly the same in both cases. Now, what you do afterwards, of course, depends on choices and goods that the person envisages.

But what worries me a lot, and this has broader implications, is the way medicine as an art is being conceived here. And I think that the rock-bottom dilemma today is whether the goal of medicine is still health and, of course, everything that is built around it. And when you cannot restore health you provide comfort, palliative care, et cetera.

But the magnetic north of medicine, it seems to me, has to continue to be that notion, whereas the idea of the physician at the service of the patient, meaning that if the patient has other desires the goals of those desires would become legitimate goals for medicine. That's where I have very serious doubts. I also think that that's a very deep mistake.

Now, the extreme of that, in my view, is physician-assisted suicide because to regard aiding a patient to die as therapy—and I've seen this in print and the literature—that seems to me completely rational. It seems to me that there is a sense in which the conceptual bearings of the practice have been completely lost.

So to sum up, I would suggest linking the two topics, conscience and futility, and second making an effort to clarify, perhaps in a normative way—perhaps physicians are starting to work more in the way in which Sue Rubin talks about it. But still I think—or at least I would favor a sort of normative reformulation of the goals of medicine. Thank you.

CHAIRMAN PELLEGRINO: Thank you, Professor. Are there comments? Janet?

DR. ROWLEY: Well, I'd like to clarify what Alfonso is saying because it seemed to me that our discussions over conscience were, in fact, the refusal of an individual healthcare provider, physician, nurse, pharmacist, whatever, to do things that they felt were morally wrong and against their beliefs, and that, in fact, at least as I read this, was not part of this document. That's a whole separate issue.

And I think that that is different than this, and I don't think the two should be linked, that they should be very clearly separate because though each one, you could say, depends on the judgment of—and certainly in this first case it's the physician who makes the decision to withdraw healthcare or medical assistance, usually of an extreme nature, to keep a patient who is considered to be hopeless to withdraw life support, which is essential for that patient's life; whereas conscience, as I've heard it referred to, refers to a whole spectrum of people in the healthcare system refusing because of their own moral position to provide the kind of care that somebody, usually a woman, is asking and feels that she needs help in a particular personal matter.

CHAIRMAN PELLEGRINO: Thank you, Janet. Peter?

PROF. LAWLER: So I think that's a good point. If you were to link them together, though, it might be in this way, that the futility issue is this: The doctor who's taken the Hippocratic Oath is very—thinks it's a matter of conscience not to do things that have no reasonable connection to health just because the patient needs them done.

This is a difficult position the doctor is in, to provide treatments which are futile, can't possibly work, and are a waste of time, a waste of money. And so doctors are supposed to aid people and avoiding death and being returned to health, and the treatment doesn't do that, so a doctor says, "This just isn't my job. It's not connected with what I'm here to do."

In the same way some doctors and other healthcare providers think, according to the Hippocratic Oath, they shouldn't perform abortions because it's contrary to the Hippocratic Oath: "It's taking away life for no good reason, and so I refuse to do it."

Now, that's a matter of controversy, and doctors, like everyone else, disagree on that, but some doctors really do believe, and nurses and other healthcare providers, that "Here I am violating my oath." And so in both cases, doctors want to be free not to violate their oath.

In a certain way, the futility claim might be less controversial simply because what life is is less controversial there. Everyone agrees the patient is alive. And in the case of abortion, not everyone agrees that the fetus is a live human being.

But still the objection is the same, and I think the conscience issue is actually much more timely and important than the futility issue, although I think it's real for doctors, in terms of adding to a nationwide debate that's likely to occur right now. I think we should focus on the conscience issue, and futility can kind of be a subset of this, but the headline should be conscience.


PROF. MEILAENDER: Well, I'd first note there's one really glaring defect in this draft that I have to call to the attention of the drafters. I don't think it takes up the embryo question. After yesterday I just thought I'd say we really—

PROF. LAWLER: Had to say that.

PROF. MEILAENDER: That's right.

CHAIRMAN PELLEGRINO: We needed a little heat in the discussion, I gather.

PROF. MEILAENDER: That's right. There's just a big gap in the draft. Apart from that, I'd make a couple of points. This has got nothing to do with the substance of the matter, and I do think we need to think seriously about what we can do in our lifetime or whether it would be futile to take up certain undertakings.

And I don't know how to answer that or how we as a body answer it, but that does seem to me to be a genuine question. We already have several things we're trying to finish, and whether we can really do this—that's one thing.

But then with respect to the actual substance, I would probably agree with Peter that the conscience issue should come to the fore. I actually think futility is a very important question and an interesting question. I think it's very complicated and very hard.

I'm pretty sure we couldn't do what needs to be done on that to take up the kind of questions that Alfonso was raising and so forth about which there's a lot of disagreement. So that futility as a whole, I think, would be very difficult to deal with.

Futility folded into the conscience issue, as one example—again, we heard from a number of people and thought about other instances where conscience from healthcare providers, physicians, nurses, pharmacists, and so forth—a lot of those have to do with reproductive medicine. End of life is another thing.

In other words, what is a conscientious physician supposed to do or nurses, sometimes, for people who want treatment of one sort or another that the caregivers can't find any good medical reason to provide?

So in that limited way I see that it—in other words, without trying to decide what futility means or settle the arguments about futility, we can recognize that there's a problem of that sort.

That would relate to conscience, but then I would relate it to just the larger question about in what sense, to what degree healthcare providers, including not just physicians but others, ought to be at liberty to follow the dictates of their own conscience or whether there are some kind of constraints on those.

That does seem to me to be an important question. I would tend to make that focus and then fold the futility in as a kind of one instance in which such a question might arise. That's what would make sense to me if we think we're up to it.

CHAIRMAN PELLEGRINO: Thank you, Gil. Alfonso?

PROF. GÓMEZ-LOBO: I'm perceiving more agreement around the table than dissents. In fact, I was going to reply to Janet that I agree, that the question of futility is one of the issues in which issues of conscience arise.

And the reason is this, that the judgment of conscience operates in all of our actions because what is conscience? Conscience is the moral judgment that one passes on the action one is about to do or has just done in a very simplified way.

And we're constantly doing that, and if we regard something as morally wrong and we do it, it is wrong for us to do it. What happens is that in most cases there's no problem. There's no issue. So it's a judgment that we make implicitly or not at all. It comes to the fore when, say, one is required to do something or to not do something and when thinks about it and when reaches a conclusion, "Gee, I can't do this. I can't do this."

Now, in a way it's a personal judgment, but it's not subjective. In other words, one can ask a person to give objective reasons for a judgment of conscience, and in light of that, one can say that someone's judgment of conscience is wrong.

I mean, we know that we are sometimes wrong, although it still would be in many cases right to do the thing that we think is right although we're wrong on that. It's a false judgment. I mean, this could all go into a report.

But I want to throw one more problem into the mix, which is this, and here I really need pertinent information, particularly from those of you who are physicians. My impression, just from talking to people, is that in many places rather than the conflict of the physician who wants to stop and the family who wants to go on, the more common situation is the one in which it's the physicians who want to go on. In other words, and it's people who are not allowed to die.

I as a lapsed Heideggarian [phonetic],I'm perfectly conscious of the pervasive presence of technology, and I have this—again, I need the empirical data on this. I have this image of medicine driven by technology such that the caregiver wants to go one step further.

We can illustrate this in two ways. One is some physicians tell me that there is a principle, at least perhaps a tacet principle, and it is that the patient is not going to die under my watch. And I've asked around, and there seems to be a very strong push to that.

The other element in this mix that I've been reflecting on is this, is that the traditional way of distinguishing when you can stop and when you shouldn't stop is the distinction between ordinary and extraordinary means. And the criterion, of course, is if the means are too burdensome or they're ineffective, they're futile, then they're extraordinary.

But the very thrust of modern medical technology is to make treatment and means and drugs, et cetera, less and less burdensome, more and more efficient. And, of course, you know very good examples of that, which means in the language of tradition that more and more means are being made ordinary from being extraordinary.

So if that's correct, and this is something I would like to examine with you, then we have the situation in which the clinician is running with these parallel lines of modern medical technology and the tradition of ordinary means, and the point at which one can stop is very hard to determine, I take it. Let me leave it at that and see if this is something that resonates.

CHAIRMAN PELLEGRINO: Thank you, Alfonso. Carl?

DR. SCHNEIDER: Any time anybody asks for empirical information I'm always very enthusiastic. I have a little bit to offer. I think that what you're saying would have been really true half a century ago and that the world has changed very significantly but not completely.

There are attempts to measure the willingness of physicians to stop. And there is apparently—information is very spotty. There seems to be quite a clear trend in favor of physicians being a great deal more willing to stop and sometimes the ones who try to encourage the patient to stop or encourage the family to stop. There are studies of behavior in ICUs.

I don't think that the discussions of ordinary and extraordinary treatment come into play anything like as much as you may be suggesting, partly because there are so many different things that you do to keep somebody alive.

And apparently the pattern has been to begin to withdraw things one at a time, and there is apparently some agreement about what order you stop things like pressors and dialysis and all the other possibilities.

And then my own observation of an ICU for a month, for example, you would see—what I saw a great deal more was the attending teaching the house officers how to induce families to stop, partly because their sense of futility and their sense of how unpleasant it was to keep a body kicking along in a metabolic sort of way.

And the unsatisfying quality of doing that made them very reluctant to just keep flogging the patient. That's my empirical sketch. I've actually got something written on this if you ever really, really want to know.

I do have a procedural question. I've never been quite sure how much a Council member is responsible for what comes out in a Council report. Coming from a more legal tradition, my idea is if you sign onto an opinion, you've signed onto the opinion, and those represent your views, and if you don't believe those things then you should write something separately.

It seems to me that if we're really going to take seriously the request to look at the two major reports that are already circulating, I certainly don't have time to do that and to think about a relatively fresh set of, as you say, often very difficult issues, not that they're not timely, not that they're not important, but there's been actually very little group discussion of it, and what that relegates us to is this kind of everybody gets the document and calls in or writes in some responses, and it's very hard to know what other people are saying. You don't have the benefit of sitting here and listening to people's discussion.

So I think partly it depends on whether the report is purely informational and not intended to express opinions, and partly it depends on this question of how much I'm supposed to be responsible for things that come out that I don't have time to read.

So I'm nervous about the idea of—I would much rather have time to do a good job for myself, at least, on the two reports that are truly coming out and that are well along than to try to spread myself even thinner, particularly if we're going also to do the Presidential Commission thing.

CHAIRMAN PELLEGRINO: Well, I share your concern. That's always the problem for any of us serving on groups, and it's refreshing to have a lawyer ask a physician for a legal adjudication of an issue. I say that with tongue-in-cheek, of course.

I agree thoroughly that every report ought to be the best we could turn out. We should have enough time, and I think that's one of the issues. If we do not have enough time, and Gil has raised that question, and I raise it myself—how much time we have is a question mark.

I'll repeat what some of you asked me. How long do we stay in existence? We are legally at the moment in power to stay in existence until September. We have been told to continue our work as we're doing it.

And I think the question of responsibility is an open one. Let me tell you, since the meeting is moving along, I asked the lawyers, Carl, to try to be on the right side of things, what my responsibility was, and this is what they told me: A, "You have no authoritative responsibility. You are not able to fire anybody, to hire anybody. It's good that you know that. You are paid nothing."

But what I'm responsible for, relevant to your point, the lawyers told me—I'm responsible for every report. So magnifying the problem you've raised, I'm supposed to read it point by point. And those of you who know me know that there's hardly any document I could agree with point by point that we've produced.

But in general I felt that my task was to turn out a document that would reflect as close as possible the opinions of the members of the Council and then dissent when I have the opportunity. And many of you know I have dissented on the issue of the definition of death.

So I can't answer your question, Carl, but I do think the most important aspect, the point you made, we should not rush anything into print. It should not go out until we think it's the best thing we can do, given the limitations on our methodology and the time and so on.

And I would answer your question that way. So I hope you all would approach these questions this way. And you have been, as a matter of fact, intimating on one side or the other, that we ought to separate these issues or combine them, and we're making record of that, and we'll try to contemplate it and see what we think about where you are to the best of our limited abilities.

Having said that, Rebecca, I'm sorry I intervened.

PROF. DRESSER: No, that's fine. I, too, share the concern about allocation of our resources, but if we were to go forward with this and folded in futility as an example of a case where a health professional—because it does apply also to nurses and other professionals caring for a patient who feel that the treatment should not continue or be initiated on grounds of futility as a shorthand for really an objection of conscience.

So I think the clearest case is when you have parents or other surrogates deciding on behalf of a patient who seems to be suffering and the health professional thinks that the patient's welfare is unjustifiably compromised by continuing because there's no chance that this intervention will sustain life.

Another case is where part of the objection is, well, going forward with this is not going to help the patient and is taking my time, resources away from other patients who need me. So that's kind of a judgment of conscience.

Some people apply futility to the permanently unconscious individual, which is obviously a moral judgment. And I suppose the judgment there is it's pointless to keep this life going. It's not helping the patient. Some people label futility or apply futility in cases where they think the treatment is violating the dignity of the patient; the patient isn't being allowed to die with dignity because the family is requesting, demanding the treatment.

So I think you could frame that, and it might be an interesting discussion to talk about how conscience plays into futility, whether rightly or wrongly. But then I was thinking about sort of the standard remedy for conscientious objection in medicine.

The way conscientious objection is framed, it applies when a certain intervention is considered legal and permissible by the medical profession in terms of ethics. So other physicians think it's ethical, but the individual physician has an objection of conscience.

So the mainstream idea is, well, if there's another physician who's willing to provide the care the patient needs, wants, then that's what we should aim for. But with futility, you have a large percentage of the physician and other healthcare population objecting to futile treatment.

So the remedy for futility—it doesn't seem to fit quite as well to say, well, if a family is insisting on futile treatment, let's say treatment that seems to be compromising the welfare of the patient, just find another physician to give it.

I'm not so sure that's a good answer, particularly because many medical organizations have come out with statements saying, "We think in certain cases this treatment is futile and should never be given."

So the profession has more ambivalence about the ethics of giving futile treatment than it does, I think, in most of the other cases of conscientious objection where, say, with life-sustaining treatment there's another physician who would be willing to remove the respirator or whatever. This isn't very articulate.

And it might be just interesting to talk about, well, what is the remedy for futility judgments based on conscience? Is it to try and find another physician? Is that really feasible? And many physicians will agree with the first one.

CHAIRMAN PELLEGRINO: Thank you, Rebecca. Floyd?

DR. BLOOM: I read this draft maybe five times and then got up early and read it again this morning. I must say I'm not convinced that this is a topic that we should take on in this stage of the life of the Council. Compared to yesterday, which was, I thought, a very interesting and unique series of contributions, it seems to me that at this stage, as we clearly are in a transition, we just don't know where the inflection point of that transition is.

It seems to me we can do the Council's reputation the most good by summarizing the past commissions, including the start that we got on ideas that require ethical consideration that future Councils might engage and end on an up note. To have futility be the topic of our last report just seems to me to be a terminal downer.

CHAIRMAN PELLEGRINO: And, Floyd, I think it would give you more sleep, would it not? That's a very good suggestion. Bill, you're next.

DR. HURLBUT: As to whether or not we should take it up, I'm not clear. However, I do see this issue, if we did have time to do it adequately—I do see there's some things in here that tie very well in with things we've already done, definitions of death, professionalism.

It even ties in with this document we're doing about ethics in healthcare. I mean, anybody looking out can see very plainly we're heading for a problem as Baby Boomers get older and there are a lot of older people, technologies that can keep people alive a long time.

And anybody trained in medicine within their first few weeks realizes you could spend the whole gross national product keeping people alive at the end of life, and it's not just ungracious to the overall balance of life, but there's something a little perverse about it.

And yet at the same time you go on a little while in medicine, and you start to feel uneasy about attitudes that just sort of mechanize the process of living and dying. The thrust of our natural moral sentiments is toward life not toward death, and I think most of us in this Council have lived through a period where technology emerged on the scene with an effectiveness never seen before in human history.

And when I was being trained at Stanford Medical School there was starting to be a sense of uneasiness about the degree of intervention in the intensive care units. And the natural sort of feeling within the community was, "Wait a minute. We're getting a little overboard here."

We did want to solve the problem of the turmoil and trouble and unnecessary prematurity of some deaths. On the other hand, we didn't want to get to the point where we were unbalancing the goods of health and their larger purposes within human life.

It seems to me in a way the document was constructed in the first place, unless I'm misunderstanding, it might have been actually set with different poles that there was on the one hand futility defined as interventions that are somehow unnecessary or ungracious.

The other side of that is not to do nothing. The other pole of that, which is the other extreme of error, is euthanasia in the medical tradition, and I'm very clear in my mind that actively putting a patient to death is not in keeping with the history of my profession.

And when you live within a profession, what sounds theoretically reasonable, like alleviating pain or something, turns out to not feel right when you're in the presence of a real patient in a real circumstance, at least to me.

And I see this civilization drifting slowly but steadily into a strange conflict and ambiguity about how to die, having exaggerated one pole of intervention and had the reaction coming back. The reaction is overshooting now so that we have quite a few states coming up with initiatives toward euthanasia, and it's very strange.

If you watch the popular media you start to realize that once you give in to the notion that there's a role of active promotion of death, the character of medicine changes dramatically. Something ghoulish enters into it, just as I would say something ghoulish is likely to enter in from the instrumental use of human embryos, not to reintroduce the issue to have it swamp us out, but these are one of a piece.

This is the question of what is the role of medicine. Medicine by its very nature is a healing profession, a life-giving profession. It doesn't sum up all of human life because the whole goal of human life is not just health, but it does very centrally have a limited prerogative, and that prerogative is life-giving, but in a balanced sort of way.

So my point is this, that there are two poles to this argument. There's over-extension of medical intervention against which the word "futility" brings us back to the art and conscience of medicine. The other over-extension is euthanasia, against which we need to bring the art and conscience of our profession back to the point where we see that it's neither too much or active the other way.

That I think is the only way we'll get through, if we are indeed heading toward more and more economic problems in medicine. One thing we must never, never get to is the point where we see it as an economic issue, just dispatch the patient. And that could enter very subtly. It doesn't have to be as cold-blooded as that sounds. It could just enter.

You're not supposed to bring up the Nazis anymore. Well, why not? You know, there are people alive who actually were subjected to that horror. Well, one of the ways they brought in the phenomenon of what happened in Nazi Germany was they first introduced notions of medical futility. They had movies and even mathematical equations in the textbooks of children talking about the cost of care.

And there was inadequate housing at the time in Germany, and they actually had in the high school textbooks calculations to be made of how many housing units could be produced for young married couples if we just didn't have to care for all these people who were sort of hopelessly futile.

And Leo Alexander —I mentioned it in one of my previous comments. Leo Alexander 's amazing essay called "Medicine Under a Dictatorship" says that this whole thing just entered in through a very subtle shift in emphasis, and that was on the part of the physicians, too, and that was the idea that there was such a thing as a life not worth living.

So whatever we do with this issue, we need to be very, very careful about it. We need to say that medical conscience is—yes, we have to acknowledge that we should not force individuals in such a sensitive realm of human life as medical care to go against the deep coherent conscience of their life.

But conscience has to be coherent. It can't be like a fetish or a disproportion of an individual's personality. I mean, if somebody doesn't like touching feet, therefore maybe they shouldn't be at a podiatrist. That I agree with.

But when it talks about something like abortion, now that's an issue that really is central to our profession. That's an issue that gets to the very core of what our profession is like. And conscience is an extremely important dimension of medicine. We must not override it. We must not label it arbitrary. We must see it as something that rises together.

And just the final point of this comment, the very word, conscience, comes from—in its English root, anyway, comes from the same root as the word consciousness. And conscience was "thinking together morally." So what I think really needs to happen, and we maybe could contribute to this as a Council, is we need to think together morally about this and not let conscience become some obscure personal quirk but find a central core of the purpose of the medical profession.

CHAIRMAN PELLEGRINO: Thank you, Bill. Carl?

DR. SCHNEIDER: Three things have convinced me that this is not a practical thing to do at this point. One of them is what Bill just said. If it raises those kinds of questions, I do not think that it's humanly possible for any one of us individually and all of us together to begin to think intelligently about those in any way that we want to expose to print.

The second one is the one that I just said. I certainly—living on an academic schedule, I can't give serious attention to anything until at least April 22.

And, third, it occurs to me that even after we generate all of this—that, a, the real work has to be done by the staff. Surely if the staff is trying to work on two large reports and maybe having to generate other kinds of things, presumably looking for jobs at some point, if we die in September, don't they have to find some way of supporting themselves?

And not just the staff, but if our Chair has to read all of this and take personal responsibility for it in the way just described, it's putting an enormous burden on him. I move that we regretfully say that we cannot write a report or a white paper on this subject.

CHAIRMAN PELLEGRINO: Thank you, Carl. Dan Davis has asked to have a word.

DR. DAVIS: Well, with regard to their concerns about procedures and practicalities, I want to assure you I feel your pain, probably more acutely than you do. Let me just tell you what I had in mind and start where we began.

We began to address these issues broadly under the rubric of an inquiry into the so-called crisis of professionalism. To me, that was about the moral foundations, primarily in medicine. And my thought was that we could write a fairly slender volume—I don't think this needs to be large—that's really an attempt to identify and clarify some key building blocks within that foundation.

One of those building blocks would be conscience, and there would be others that are related more to the issue of futility. One of those is the duty to determine effectiveness. I won't comment on your comment on what the empirical data tell us about the practice of medicine with respect to withholding and withdrawing treatment. We know that a huge percentage of deaths in hospitals are preceded by decisions to withhold or withdraw.

What we don't know is the process of communication between physicians and patients that precedes those decisions, and that's what fuels the controversy around futility, in part. But I think that we do have sufficient evidence to question whether the duty of effectiveness is fulfilled as it should be.

Now, I'll revert to anecdote. Over the course of eight years at Georgetown I probably interviewed 600 medical students. I was astounded when I would ask them, "What do you feel your duties are to patients?" They would say, "To do what the patient wants. That's my duty."

And I thought, "Well, you could do that without going through eight years of medical school and residency. You could make those decisions on the basis of little practice or little study of the science of medicine. The reason you study science and the reason why you have the clinical experiences you have is primarily to prepare you to fulfill the duty of effectiveness, of determining effectiveness."

So I think some words—sort of an effort to retrieve and to emphasize that duty—I'm going to get in trouble with my former mentor by saying this, so I probably should step away, but in my experience as an ethics consultant, I often find that physicians do a very poor job of leading patients and families through that process of helping them understand the effectiveness of the interventions they are either withholding or recommending be applied to their patients—very, very poor job.

So that raises for me a second duty that we could emphasize and clarify, and that's the duty of communication. And the third would be the duty of, yes, tailoring interventions to patients' preferences and values insofar as those interventions are consistent with the integrity of clinical judgment.

I think you could do that in a fairly—I hesitate to use the word—telescopic way and avoid a lot of the smoke that surrounds the conflict of futility. And to me the focus is what are the moral foundations of medicine, and I would focus it on medicine and have some section that deals with conscience and the history of that topic and its importance as a foundation and then deals with these duties that are invoked usually in conflicts around futility.

Now, can we do that and do that in the time remaining? I think we'd have to pull together what we've already done on the two topics and see if we might have something that would be ready for our June meeting and for a fairly full discussion at that meeting.

So I don't want to appear too assured in thinking that, yes, actually, we can do this and it's no sweat and all of your concerns are baseless. They're very well based. But that's the idea behind the volume, at least, that I've had in mind.

Now, we've disagreed—because this was the way I was hoping we would pursue these two topics from the very outset, that we would not disaggregate them. I think they are separate in many ways, although you often find in the literature, especially the nursing literature, that conscience is often invoked with regard to futile treatment. I think we need to disaggregate them but also then point out the ways in which there are apparent resonances between them. So that's my take on this.

CHAIRMAN PELLEGRINO: Thank you, Dan. I have a little more extended statement than I usually make, not in reply to Dan. I don't disagree with you that physicians don't handle this very well. That's one of the problems. But I do want to tell you where I stand on it now since we've gotten to that point. But, Janet, please, and then—or Gil, I'm sorry.

PROF. MEILAENDER: I just want to get on the queue.


PROF. GÓMEZ-LOBO: Very briefly, it seems to me that the best way to move forward would be to decide, and I wholeheartedly support Floyd 's proposal, to do as our last report the report on past and future councils. I think that would be a very good thing to do.

So the question is, then, do we have the time, the resources, to do this other report sandwiched between the two. But I think you're absolutely right. We should end with that one. And I can think of a volume in which we have, say, the expositions of our four testifiers from yesterday and not much input on our part.

It seems to me that that would be a report—well, we can, but we would not be forced to go through everything. It would be more like an anthology of all the people who have had the experience of working on councils. So the pending question is do we have the time, the stamina, et cetera, to bring in this report in between.


PROF. MEILAENDER: Not quite sure how this queue is working, but I'll speak. One quick comment with respect to what Alfonso just said, if we think we want to do something on sort of past councils and how we've come to here, that's fine.

I would oppose doing anything on future councils. I don't want to tell future councils what to do, and I don't think they'd pay any attention to us if they did, and you can't predict what will need to be done, so wouldn't do that.

On this question, I certainly don't have any desire to specify how the staff should spend its time or how many hours the staff should spend working, you know, in the next few months. And if there's a deep desire on the part of the staff to try to do something, I'm not going to say don't do it. I mean, we'll have to see what gets done and what we think of it. So it's not as if I would say don't do it.

I just sort of have two qualifiers for what Dan had to say. One is that I would still like to see the issue of conscience come to the fore. The duty of effectiveness, as you described it, may focus a little too much just on the futility question, and I think the conscience issue is larger than that.

And so if you want to do, I'd like to see it. If you want to do it and have me say a couple of months from now your time was well spent, I'd like to see it framed a little differently.

The other thing—and, again, the proof of the pudding, I suppose, is in the eating, and I'd have to see it. I'm a little worried about the duty to communicate business, not because I don't think there is one or anything like that, but because I don't believe that—and this is not to prejudge what the staff will produce, but I don't believe sort of pious utterances on this accomplish much.

It's not quite clear how you turn people into good communicators, but I suspect a document from the President's Council doesn't accomplish that. So I would just worry about pieties there that—I mean, we said for a long time just have them take a humanities course and it'll help. And, of course, we all know that's not right.

So it's just a worry is all, I'd say. But, you know, if the staff thinks that in addition to all the other things they can do this, I'm happy to see what comes of it. But I do have continued worries.


DR. ROWLEY: Well, my question was going to be on what you envision as being the extent of the discussion of conscience because I come back to my earlier comments that at least as it's used in the public press the discussion over conscience is centered on the question of abortion and/or the morning-after pill or whatever, and it's the concern and the right, really, of someone in the healthcare profession of not providing a service that is—at least some members of the society think is morally acceptable to women in need and particularly to a woman who maybe, due to being in a rural area or poverty or whatever, has very restricted access to medical care.

And if the one provider, the nearby pharmacist or almost the only pharmacist or the physician refuses something that's needed in a very timely manner—it's not something you can take care of next month or the next six months.

That lack of legal medical care really does have life-altering influence on that woman's circumstance. And if conscience—if that example is included in the use of conscience, then I don't think it should be linked to the use of conscience as to what you decide is a futile treatment for a patient.

CHAIRMAN PELLEGRINO: Thank you, Janet. I'd like to make a word or two if I can. We've been talking about pain and feeling pain. Your Chairman is tossed between three cards: one, what does the Council think; two, what does the staff think; and three, what does he think, which I've not given you much insight into for particular reasons over the course of my chairmanship, the one being that I've—and this probably shouldn't be said, but I've published something on almost every topic we've covered, and I did not think I should burden you with my published material. But it does put me in the position of having a position already established.

On this matter I have written on both conscience and futility, and for the first time and the last time, I would recommend and I hope that some of you might look up one or two of those articles both and separate them, because in my mind one ought to develop the concepts as concepts and then bring them together when in reality in medical decisions they need to be brought together.

And you brought them up in one example, and we've had other examples from Bill and so on. So my position is clearly to separate these entities, as I have done so, and I'm not changing my position. I've been silent on it because I wanted the Council and the staff to express themselves, and I will try to put that together in a reasonable form.

I do think that there is a very serious question of futility. I don't like the word. You heard me at the beginning. And the way I'm encountering it is a little bit different from what you suggested, Alfonso. Things have changed in the past decade.

As a physician still, still seeing patients and doing ethics consults, also, the problem we're running into relates back to what Dan said about the perspective of medical students. I'm seeing more and more the physician saying, "I must do what the patient or the family wants."

Today, more and more, partially because of the excess of expectations medicine has built up in people's minds, the question is not so much stop care but continue care. Now, I defined futility. I'm not going to put you through it, but it's definable in my mind in terms of effectiveness, benefit, and burden, and there's a way to do that calculus so that it is not a vacuous notion.

I don't want to go into that now, but to indicate that I think you can take that as a separate item, and it becomes important because when I do my consults, physicians—mature physicians—say to me when I corner them and say, "Look, man to man" or "woman to woman, do you think that this is in the best interest of the patient what you're doing?" the answer is, "No. I'm doing it because the family wants it or the patient had it in her advance directive."

That brings a question of conscience in. So the two are joined around a particular point, but they need to be developed as concepts separately. I've expressed my views on it. I'm not going to burden you with it, but I'll only point out to you that futility is the oldest ethical concept in medicine.

Three thousand B.C. the physicians to the pharaohs commented on the futility of treating patients who have had transection of a cord which they diagnosed with great precision. Any clinician today who knows his onions would say, "That patient has transection of the cord."

Today we can keep such patients alive. Then they couldn't, and they said, "Don't try to treat it. It's futile." Three thousand years ago. Hippocrates pointed to futility. There comes a time when the patient is beyond the call of medicine, and the physician should recognize it, and the patient should recognize it.

All right. I'm not here to preach. I just want you to know I know a little bit about this subject, and I deal with it every day. It's an important topic, but I frankly do not believe we can deal with this kind of topic, and the staff knows that I have a variance of opinion with them about whether we should do this topic.

Personally, if I now can put out my first-time advice to do something, don't take it up because around the table I've heard enough to indicate that we cannot unscramble these particular points of understanding, and, I believe, a lot of misunderstanding about futility and would suggest that we move on to something else that we can do better. Peter?

PROF. LAWLER: Thanks so much for pulling the plug on that. I agree it's a complicated issue. I've learned a lot sitting here, way too much too fast to have an opinion on it. So I think we need to let it go and put it out of its misery. No drug can cover the pain.

So I agree with that. And to me, the last meeting—I think this really will be the last meeting in June unless there's some kind of miracle beyond all human understanding.

I would like to see, especially the original Council members, take the lead on these three big issues we have, the two big reports that haven't been issued, the organ report, which we spent a lot of time on and I think is very important, actually, and a very extreme public policy relevance right now. This organ market thing is a real danger.

So I would like to celebrate releasing that, as I hope it's ready by then, and then give the Council members an opportunity to give their reflections on that, and if they disagree with it to just not only write up but speak about their disagreements, and the same way with the healthcare report.

If it really is done by then, I would like to have a session or two on that. And if Council members disagree I'd like to see them go on record and disagree. We can have the famous reasonable disagreement we've had on this Council and not the fake consensus that other councils have had.

So I would like to see that, and I'd also like to see—it would be okay with me. I learned a lot yesterday about the difference between this Council and previous councils and commissions and such. I wasn't here at the beginning, so I'm not praising myself or anything, but this one got off to a much better and different start, stayed with it for eight years.

And so I'd like to hear especially some of the Council members who have been here all along, Bill and Gil and other "il"s to really put their reflections on record. So if we could do just three more things, I would like it to be those three things, to talk about the organ report, to talk about the healthcare report if it really does get done, and then to talk about the great distinctiveness of this Council.

CHAIRMAN PELLEGRINO: Thanks, Peter. I can say that we are committed to completing the things that we've started that are that far along. I think it would be a failure of responsibility not to do so. And I think our major attention should go into that.

So I have no problem, and I don't think Dan does with that, either. We both agree very strenuously. I don't want to give you the idea that I'm in constant daily argument with the staff, but on this particular futility thing, I thought it was something that would probably meet the fate that it did meet here this morning.

DR. HURLBUT: I want to ask—we did have sessions on the conscience clause, and the matter of conscience, of course, is central to our notion of professionalism. Is it going to be somehow put into the documents as we go here?

I mean, it seems it's like one of the major issues of our age, not just because of the current political controversies over it but because it comes down to the very meaning of medicine itself and the prerogative of the physician. And in essence I think it's sort of unfortunate not to make some statement of it.

Here's my larger perspective: I think, regardless of how one feels about any individual action of medicine—and Janet has brought up some of the social dilemmas that exist here, and Alfonso yesterday, too—it seems to me we're heading into a phase of our social history where we're going to have more and more conflicts over conscience.

Without judgment, I think—I have judgments about this, but prescinding from my own personal judgments on this, I think the notion that the United States government is now going to fund embryonic stem cell research edges very easily from there over into the active engagement of the government in projects that involve direct destruction of human embryos.

And for many Americans that will be a matter of deep conscience violation, which simply means that—I mean, the polls are something like 40 percent oppose even the use of the IVF embryos.

So now if it edges over to the actual creation of embryos intentionally and then the creation of cloned human embryos and then perhaps many, many embryos, and then it may be later embryos, then the state—the reason I bring this all out is not to reengage the argument but just to say that there are going to be many, many more conscience conflicts coming up because whereas—the fact is in the general clinical setting not that many physicians actually deal with abortion. There are a few people who do abortions. In fact, the average physician doesn't have much to do with abortion.


DR. HURLBUT: But embryonic stem cell research, as Janet has pointed out, is very foundational biology, and depending on how we go forward now, we could have many, many people objecting or feeling good about it, you know, from either side, but that means that there will be many, many conflicts of conscience, many more lawsuits.

It's not going to be like abortion where just a few people deal with it. It will be part of laboratory training. It'll be a part of many lab opportunities in medical school. It will be a part of much clinical care. Depending on how deep you think the matter of complicity goes, there will be a lot of conscience clause type problems.

CHAIRMAN PELLEGRINO: Bill, there's no question about that. I think the other question, however, is can we do a good job in the time assigned—this is a critical issue, and I thoroughly agree with you, but I'm not sure we can. Rebecca, I know you want to make a comment.

PROF. DRESSER: I think everyone agrees that conscience and futility are both very important topics, but most people agree that we just, given our resources, cannot manage to take that on, on top of the other three reports.

I would say that there still is a lot on our record about these topics. We have the transcripts, and we have the materials, and people who are interested in reading about what we've done on these topics have that resource.

And the other thing is we will be free—even more free once this is over—to write about these topics, as well as anything else that interests us that the Council has talked about. So I don't think we should view this as all or nothing. It's just a decision not to make a particular kind of contribution.

CHAIRMAN PELLEGRINO: Thank you, Rebecca. And I would add the following: Remember, the Council members have always been free to write as extensively as they want on any topic to be included in the record. And that can be in between.

Now, I would invite those of you who want to, to add to the record and express your thoughts about these things which we will not have a chance to do because of the time limitation. Bill, your conscience statement—I think put it in writing. Get it into the record.

Yes, Peter?

PROF. LAWLER: Clarification, I think there's a difference between the status of the organ thing and the status of the healthcare thing. So I think we could safely have a discussion of the organ report as if it were done. I think it might be kind of clarifying not—the healthcare report not be finalized until after our discussion at the next meeting, that it still be a work in process.

And the same way with the—at the next meeting we should decide for sure how to handle the reflection on the work of this Council report, if, in fact, we need to do that. But I do think we should have oral reflections on the importance of this Council either way, but the character of that report, I think, still is up in the air.

CHAIRMAN PELLEGRINO: Okay. We have a public session, and we want to allow for that. Let's take a break and come back in 15 minutes.

  - The President's Council on Bioethics -  
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