Setting Limits: A Calculus of Healthcare for the Aging

THE OPEN MIND
Host: Richard D. Heffner
Guest: Daniel Callahan
Title: “Setting Limits: A Calculus for the Aging”
VTR: 9/15/90

I’m Richard Heffner, your host on THE OPEN MIND. And I suppose that it might have appeared somewhat more seemly if I had devoted OPEN MIND episodes to today’s subject back when I ws 31 years old and had just begun this weekly program. For then my interest in the subject might have seemed less self-serving, less self-centered. Presumably there would have been less of a conflict of interest.

For now, after all, I am rapidly (hopefully, at least) reaching my biblical allotment of three score years and ten, and can’t any longer look dispassionately or disinterestedly at the suggestion, as I understand it, that my guest today has set forth so intelligently, deliberately, forcefully: that as a people we must now consider, define, and then draw a realistic medical/moral dollars-and-cents line at which we set real limits upon the medical care society provides the vastly increasing numbers and proportions of the elderly in America.

Daniel Callahan is the Director of the Hastings Center, renowned for its examination of ethical issues in medicine, biology, and the professions. Most recently Simon and Schuster published his What Kind of Life: The Limits of Medical Progress. Earlier, it published his pioneering Setting Limits: Medical Goals in an Aging Society…and that’s the subject that I’d like to take up first.

Mr. Callahan, thanks for joining me. I, I hope I’m going to be able to convince you to sit here for two shows and touch the old book first and the most recent book second. In this matter of medical care for the aging, and the rationing that you seem to have suggested, I wonder what basic philosophy undergirds and informs your points of view.

Callahan: Well, really two things. First there’s a kind of philosophy about medicine and health itself. I think the first thing that I began to think about when I thought of my own aging and what’s happening in our society, which is an aging society is, where is medicine going? What is the purpose of this entire enterprise? Is it…if it’s to save life, does this mean that medicine is aiming to make us immortal, to keep us alive to 100, or 125, or 150? And really asking the question: What is medicine all about? Particularly medicine which has already had enormous success, that, that now gives us the longest lives of any people in the entire history of the human race. Where is it going? The second thing is really a very practical matter. The cost of health care for the elderly is going up very rapidly. We don’t know how to manage those costs. We know over the next 20 or 30 years that the number of elderly are going to double in this country from 30 to 60 million. We know also that the proportion of young people who are going to support this aging population is going to diminish. And right now, for instance, we have about four working people supporting every retired person. In 30 years from now it’s expected that‘s going to be about 2 young people supporting every retired person. So, what you see is a very…an enormous practical problem looming. How are we going to pay for this? Sort of superimposed, I think, upon a more fundamental question about what, what medicine itself is up to.

Heffner: Well, let’s look at that fundamental question. I gather from re-reading your book that there is a sense that what we really don’t want in this country is to deal with death, the phenomenon of death, and we’d really like to live forever, and then hoorah for those medical, technological advances.

Callahan: I, I think that’s exactly the case. I remember when I was growing up…I…when my Grandmother died she was laid out in our living room, and that’s the last case I ever saw that happen. Thereafter, people died in nursing…I mean…there was a funeral in a funeral home, and increasingly, of course, you don’t even go to a funeral home. You’ll have a memorial ceremony some, some months later. And people…now die in institutions, hospitals or nursing homes, and we put death out of sight, and then at the same time, of course, the medical…I don’t…I mean I don’t think any doctor would say that they’re aiming to conquer death, but they certainly aim to conquer all the causes of death. I mean you have the National Institutes of Health that after cancer, heart disease, Alzheimer’s, stroke, everything that brings us down medicine wants to get rid of. At the same time, in a crazy fashion, we’re supposed to somehow accept the fact that we die, while meanwhile trying to constantly stave off that. So I think there’s an enormous confusion on the subject about what, what …about what the purpose of medicine is. Is it immortality, or is it simply to cure disease? If it’s to cure disease, where does it stop? Is it going to stop with…I mean obviously once you cure disease in young folks, what about curing disease in 95 year olds? Or 100 year olds?

Heffner: Well, what’s your answer to that question?

Callahan: My answer is that for all sorts of reasons, practical and philosophical, and even spiritual reasons we, we should set some limits. We should set some…we’re going to have to set some limits economically because the cost of sustaining the kind of onward march of progress with the elderly I think is simply going to be unsustainable. I mean we could do it. I mean we’re a rich country, but we’ll do it at the price of things that the young people need. Right now an elderly person in an intensive care unit is getting…can have tens of thousands of dollars spent on him, where you go right down the street and you’ll find very terrible schools and a great disparity on what we’re spending on children in this country. So we’ve got a practical problem. Secondly, I think for our own good in thinking about our lives, in the life cycle itself, I think we have to come to grips with the fact that we age and we die. Every other generation did this. But I think we, we’ve been kind of…beguiled, I suppose, would be the right word…Beguiled by contemporary medical program to think “Well, maybe we’re going to be different. We can beat, we can bet disease, we can beat old age. And death itself, maybe we can’t quite beat it, but by gosh we can keep pushing it off into the future”.

Heffner: Dan, do you think that’s a function of the general population or of the medical population?

Callahan: I think it’s a little of both. There’s no doubt that physicians are trained to be very aggressive. They are out to get rid of illness and death. At the same time I think, I think the lay population very much wants that also. Although I would add an important stipulation: I believe people are becoming increasingly wary of some of the medical progress. I certainly know people in my age group are beginning to think about getting old. They’re thinking about dying. They don’t want…they’re wary of dying in hospitals with the classic tubes coming out of them… Their role certainly of dying in a nursing home perhaps curled up in a fetal ball, demented, diminished people. And to me, what’s happening here is they kind of sense people…of course, they know about the cost, but even more they’re beginning to see in their own lives that much of this medical progress. Particularly at the elderly, does not produce such a great result. It may, in fact, keep your body going but as a person you may be in terrible shape, and you may be sorry, sorry they succeeded with you.

Heffner: Well, you talk about limits, limitations. And obviously the first limitation is upon our spirits, our souls, our bodies, the length of time we were “meant” – if that’s not inappropriate – to inhabit this earth. That’s a limitation I guess that many people would unconsciously like to set aside. How do you deal with that?

Callahan: Oh, I think that’s very…I think that’s very hard because the very promise of medical progress is that we overcome limits, that, that there aren’t biologic “givens”. I mean a hundred years ago people thought that, I mean, that, that babies died, that women died in childbirth, that, that infections and plagues came, and that was simply the way the world was. And, of course, the great revolution in medicine was the advent of science to medicine and the view that “My gosh, things aren’t ‘given’. You can change. We don’t have to be fatalistic about our bodies and our fates”. And, of course, we’re powerfully infected with this view now. It’s a wonderful view. I think there’s great truth to it, and yet at the same time, after you’ve played this out for 50, a hundred years as we have, and we begin to see some of the consequences of this – financial consequences, psychological consequences – then it’s a different story.

Heffner: Tell me what you mean by “psychological consequences”.

Callahan: I think the…you know psychological consequences…is something that interests me very much. I think when I was growing up, people really understood what it was to live a kind of full life, and to prepare themselves for death, and recognize that, that you got old and you died and that’s the way things are. And, of course, to some extent that’s still clearly the way things are. But I think people now don’t have a kind of ritual, ritualistic, orderly way of dealing with the possibility of death. Mainly because medicine really, really says, “Well, don’t give up hope. There’s always something more we can do for you. Maybe you don’t have to die of cancer. Maybe we’ll find a cure for Alzheimer’s”. So, so that we don’t quite reconcile…we don’t reconcile ourselves as well to our fate as people in earlier generations did. And we don’t simply because we think that we will beat it. We really can beat an awful lot of the disease.

Heffner: Well, also the institutions that once fostered an older notion in man’s fate, whether it be religion or the home, the family, those have not held up particularly well in our time.

Callahan: Well…

Heffner: So what we have is…well, are your medical friends…

Callahan: Well, those institutions, of course, have been changed by this very technology as well. I mean one obvious problem with the aging is who’s going to take care of the elderly? Particularly if you’re demented or you’re very feeble. In an earlier generation it would have been the children who took care, and provided the money. The elderly would live, live with them. Now, of course, we have many more working, working…women used to really do the major caretakers. Women now work. Homes are smaller. It’s very extraordinarily difficult to take care of the elderly. This is…I think creates an enormous problem for the elderly. They don’t want to be dependent on their children and yet at the same time they might still need those children. The children, in turn, have their own kids to worry about. You, you…we have a culture that really has not yet adjusted to this enormous change. The result of medical progress keeping us alive longer and yet, not keeping us healthy, necessarily, but keeping us often weak and dependent and creating a kind of chaos in the family and, I think, enormous psychological unrest. My gosh, it’s a wonderful thing that Dad is still alive. On the other hand, it’s not so wonderful that he can’t get out of bed very well, and it’s not so wonderful that he’s incontinent and that he, that he’s ashamed of himself. It’s not so wonderful that we’re going to have to put him in a nursing home, but he doesn’t want to be in a nursing home. It’s wonderful in a way that he’s still alive and yet we can’t keep him in the home anymore because my wife has to work and my…and this is to me all the kind of…I mean it’s wonderful, you have…we have this enormous progress which has simultaneously generated incredibly fresh and new and hard problems.

Heffner: Now, how do we draw the line in terms of the treatment of the elderly, and where do we draw the line? And who draws…

Callahan: Yes.

Heffner: …the darn line in the first place?

Callahan: Let…let me say first of all I don’t think right now we probably need to do this. I think we’re…right now I suspect we can keep muddling through and not be drawing some lines.

Heffner: Financially?

Callahan: Financially…sure, the bill is going up but we can afford the bill. What I’m trying really to think through is where are we going to be ten or twenty years from now when the numbers are much greater? I, I want us to start thinking about these matters now while we still have some time. But let’s imagine we’re, we’re twenty years down the road…and the number of elderly has increased by 50 or 75%. What are we going to do then? I think…the first place I would begin probably would be with the federal Medicare program. That program provides health care for the elderly. Right now that health care is, I think, wildly biased. It is very good in supporting sort of acute care, high technology medicine. If you have a heart attack, Medicare will do a very good job by you. If you get out of that hospital, though, and you’re…and you’re not in good health and you’re going to need long-term care then our system is very poor. So the first thing I would do would be to correct the imbalance between a kind of medicine that cares for people and that which tries to cure people.

Heffner: Ah, now wait a minute. Are you suggesting then in this cure/care dichotomy that we put more into care and keep what we have in cure?

Callahan: I think we have to set some…well I would set the limits on the high technology cure and the first step would be to transfer some of that money to caring. Because right now many elderly are much more anxious about the possibility that they’re going to become impoverished by the necessity of living in a nursing home than I think they are by the possibility of death. So I think we need, need first of all to get a better balance between caring and curing. And secondly, that requires then that we will have to set some limits on the high technology care. And the way I would do that…I’ve tried to think of different ways of setting limits. One obvious way you could ask is, “Is the treatment going to work? Would it be beneficial?” That’s a popular idea of setting limits. I don’t think that will be effective. I think we may have to use age itself because age is open, visible. It would be fair in that it will affect all of us. And the question is “Where would you do this, at what age?”…a very hard question. I would…I myself thin that probably by the late 70s or early 80s most people have lived reasonably long and full lives. Not perfectly long…my Mother took up painting in her mid-70s and kept going till the mid-80s. People keep developing. But it seems to me that if we had a health care program that would guarantee that we’d live at least to old age, that we got to our early 80s, it would not be unfair or unreasonable then to set some limits.

Heffner: Dan, you say it would not be unfair or unreasonable. But let’s take the elderly person who has lived a good life and accomplished many things that we identify with a good life. Now, the years have passed and that person is in the late 70s or gone into the 80s…

Callahan: Yes.

Heffner: …do you think anyone could accept the notion, someone who is vigorous, who is not hospitalized, who is not in the kind of position you described before, do you think any one of us could accept that notion that time was up, major medical efforts need not be made on our behalf?

Callahan: Well, let me first stipulate that I would allow…certainly allow people if they want to say privately, I’m really talking about government support beyond a certain point. If you want to say private…let’s put that aside. I think it would obviously be extraordinarily hard to accept. But…and the only reason one would even think of doing this is you have to ask the question that if we keep going ahead with the medical progress of the elderly, what is going to happen to the young people who have to pay for this? I mean…

Heffner: Yeah, but…

Callahan: …what about our schools? All the other things we could spend money on?

Heffner: But wait a minute, wait a minute, wait a minute. You know that we have to deal with one at a time though the two come together. Our ability to do what the nation or the population that is growing older would like us to do, and our ability to do it. But at this point I’m asking you about how we make the determination. You say you’re talking only about governmental funds. You’re talking about what our neighbors will do for us through their tax dollars.

Callahan: That’s exactly right.

Heffner: Okay. And I like that metaphor…but, that means if our neighbors…are neighbors to the rich…they don’t have to bother. But if our neighbors are neighbors to the poor, then you have a class decision, an economic class decision in terms of who lives and who dies.

Callahan: Well, we have…let me give you a logical puzzle here. First of all if we try to provide everyone in our society with what the richest person can get, we can’t possibly do that. I know one very wealthy person whose life was saved from leukemia because he went to Israel and found an experimental drug treatment and spent tens of thousands of dollars finding that. I don’t think anybody would argue that we could have a health care system whereby the government would allow us to find experimental foreign treatment, and that’s an extreme case, but that’s…the rich can always by their way out of every system in the world.

Heffner: And you’re accepting that?

Callahan: I’m accepting that because secondly, it seems to me the real test is do you have a decent health fare system for the poor, which while it doesn’t give them what the rich get, still would give them a great deal. Se, along with my limit on…age limit, I want to improve the health care system. I want better long-term and home care. I want national health insurance so that right now not only the elderly really have guaranteed care. I want to make sure that everybody gets guaranteed care so that I can really say to a poor person growing up “My gosh, we’re going to give you good health care. We’re going to help you become an elderly person. We’re going to get you through this life cycle. The price of doing this is we’re going t o have to set some limits and we, we will have to draw a line somewhere, but we hope by the time we’ve drawn the line that you have had a good long life”. Granted there are some people who are going to get some more, there is no way to organize a society short of totalitarianism where that’s the case. One image I have is a very simple one. I think if we have decent highways and you and I can drive our cars, it doesn’t outrage us that wealthy people can get helicopters and beat the highway system altogether. The outrage comes when the highways are so jammed and so poorly kept up that then the rich people don’t have to bother and then the gap…but I, I figure as long as the gap isn’t an enormous gap, we can live with it. We can tolerate it.

Heffner: Oh, you’re kidding. You take someone of my means and contrast that with the means of the person you described who was able to beat the leukemia rap…

Callahan: Yeah.

Heffner: …and you think for a moment that I would, for myself, or for my loved ones be willing to look back and say, “Well, I’m getting a shake. He’s getting two and a half shakes”, and be satisfied?

Callahan: Well…

Heffner: Too much? You know Max Lerner sat at this table…

Callahan: Yeah.

Heffner: …just a few weeks ago and we were talking about your ideas here, just briefly, and Max said for all the respect that he has for them, he was saying he’s a medical populist…

Callahan: Yes.

Heffner: …and this certainly is a nation of medical populists who want what the other guys get.

Callahan: Well, I think that’s absolutely right. But it seems to me we’re going to have to have people who are going to have to think about the welfare of their children and others. We’re going to have to think of…if you, if you want a kind of rigorous medical populism, you have two choices. You give everybody the trip to Israel for the experimental drug, which nobody…we can’t conceivably afford, or we have a totalitarian state and you, you put your gun to the head of somebody who wants to go for the experimental treatment. It seems to me you’ve got to live…what we see in Eastern Europe…they work for egalitarians, but what you‘ve got is corruption and bribery as a consequence. I think, I take it for granted that there have got to be different tiers in medicine, that we can’t be utterly populist. We cannot afford to give everybody…medicine moves along as it finds more and more expensive ways to keep people alive. We cannot afford to give everybody what medicine is going to turn up. It’s just not going to be affordable.

Heffner: Well, you, you say, and I want to know what you mean, and I made note of this while reading…what you mean by “premature death” and “reasonably long life” in your statement that all one can ask one’s neighbor, who pays the taxes, is that “he help you to avoid a premature death, to live a reasonably long life, and to make [my] last years” (if I’m the person) “as comfortable as possible”. And I ask what you mean because…

Callahan: Yes.

Heffner: …each one of those characteristics requires a value judgment. Who makes those value judgments?

Callahan: Well, here I’m starting with the rather common experience…I, it’s a common experience of simply going to funerals or memorial services. I, I think here of my mother…died at 86. I had a child that died of sudden infant death syndrome. When I see the difference…when my child died everybody…this was a, a terribly tragic situation, everybody thought this terrible, it was genuinely wrenching that the baby had died. My mother’s death at 86 was very different. My mother…people loved my mother. They said “We’re going to miss her. It’s so sorry she had to go, but she lived a good, full…long, full life”. It was not like the baby. There is a concept I think most of us are aware of with a person who…particularly people who die in their 80s…they’ve raised a family, they’ve worked, they’ve had a career. We consider…it’s…death is always sad, but it’s not tragic and we don’t consider it certainly outrageous that, that people die at that age. So that, let’s…a premature death is a death that occurs to a young person, a teenager in an auto accident, a family…a father of a family in his forties or something, that we consider tragic and terrible, but, but a person who has lived a long…we can quibble “What’s a long life”, and it changes a bit, but the point is, I think, the concept makes a certain amount of sense. We, we do not…my mother’s death at 86 of cancer was not, on one considered that a premature death. Well, they said, “My gosh, you could have kept painting another ten years”, and so that’s…I’m getting the concept from a lot of our ordinary friends. Who decides? I guess when we’re beginning to set limits here, I would want us to talk about this and say, alright, we can’t give everybody everything. We’re going to have to draw some lines. If we could…could we agree that we will try to make sure that everybody lives at lest to age 80 and is well-supported, and thereafter we’re not going to abandon them, but we’re going to have to set some limits?” If we agree on that, we have a terrific health care system, a better one than we have now.

Heffner: Better financed?

Callahan: It would still be a costly system. We’re not…my proposal is not going to cut back on costs, but it’s going perhaps help them plateau and keep them from running absolutely out of sight, which is what’s happening now.

Heffner: Well, last year, before I turned 65, I suppose it would have been easier for me to have accepted that because the number 65 appears really only at the beginning of your calculations here.

Callahan: I just turned 60, so I’m…

Heffner: Well, you…

Callahan: …hot on your…

Heffner: Well, not…

Callahan: …hot on your footsteps.

Heffner: Okay. But when I reach the age that you say is sort of sufficient, boy I’m not going to like Dan Callahan, anywhere near as much as I like him now. And I can’t imagine living in a society…

Callahan: Yes.

Heffner: …where you are told, through the numbers…

Callahan: Yes.

Heffner: …”you’re finished”…

Callahan: Well…

Heffner: …”you’re just about over. What we’re going to do now is make sure that the pain is minimized”, and that’s, I think, what you’re suggesting.

Callahan: Well, but here is what I’m proposing. I’m not proposing…I want to live in a society that you and I have created. I want to persuade you that you and I together will agree to set this limit on ourselves. We tell our legislators “Draw a line. Draw a line for the good of our children. They’re going to have to pay for this. Draw a line for the good of other societal needs. Draw a line so that health care for the elderly does not run away with the entire economy”. I, this is not something imposed by others. We impose this upon ourselves democratically. We agree that this is a sensible way to run a health care system. So it’s not an alien force. I want us…I’m trying to…I wrote this…I’m trying to write here to persuade ourselves to change our thinking here so there is no sense of imposition. I thought of this idea. I want to impose it upon myself. I would like to persuade you to join me in imposing it upon yourself.

Heffner: Now Dan, we all write the laws in a sense. We elect the legislators who write the laws, and who establish criminal penalties, right?

Callahan: Yes.

Heffner: But when we are individually apprehended I doubt that there are very many persons who are convicted of crimes who say, “Gee, I think that’s fair. I voted a few times; I participated in this whole business, and now the punishment. It fits the crime and I established what it would be”.

Callahan: Yeah.

Heffner: It’s a very strange formulation.

Callahan: Well, it…no, my format is a little different…this is not a crime. I’m merely saying you, as a taxpayer, are going…you and particularly your children as you get older are going to be paying the tax…

Heffner: Yes.

Callahan: …bill for this very expensive Medicare program. We’re going to draw a line because you as a tax…particularly children…are not…see, they don’t want to see their pay…the estimates right now…if we go at the present course…the estimates are that we could…that we could be asking our children to pay from 40 to 50% of their entire income for health care for the elderly…for you and me. And I think that would be an outrageous demand upon our young people and hence I want to draw the line for them, and the way I want to draw the line is we set a limit on Medicare…it’s not going to make it illegal to get these things. It’s going to say “beyond a certain age we will not reimburse you for the following kinds of very expensive procedures”.

Heffner: And unless you’ve been, unless you inherit wealth or earned a very great deal…

Callahan: All…

Heffner: …tough nuggies, as we used to say.

Callahan: Tough nuggies…or if you’ve taken care of yourself because now we know an awful lot about health behavior, you have a very good chance of living well into your 80s, if you haven’t smoked and you haven’t drunk excessively, you’ve taken good care of yourself, you have the perfect option of…if you want to do it you can save a lot of money for this purpose. Some people will decide that’s worth it. I know somebody now who is literally saving all kinds of money. So…of course, I ask you if you don’t want this kind of a limit, are you prepared to just, just see the proportion of money we spend on the elderly go up totally out of sight, which you, of course, won’t have to pay, but your grandchildren will have to pay. That’s the dilemma.

Heffner: Dan Callahan, you pose the dilemma well. We’ve come to the end of the program. Stay where you are and we’ll do another program. And expand it to the limitations of medicine generally, not just for the aging. Thanks so much for joining me today on THE OPEN MIND.

Callahan: Thank you.

Heffner: And thanks, too, to you in the audience. I hope you’ll join us again next time. And if you care to share your thoughts about today’s program, its provocative theme, please write to THE OPEN MIND, P.O. Box 7977, FDR Station, New York, NY 10150. For transcripts send $2.00 in check or money order. Meanwhile, as an old friend used to say, “Good night and good luck”.

Continuing production of this series has generously been made possible by grants from: The Rosalind P. Walter Foundation; The M. Weiner Foundation of New Jersey; The Mediators and Richard and Gloria Manney; The Edythe and Dean Dowling Foundation; The New York Times Company Foundation; The Richard Lounsbery Foundation; and, from the corporate community, Mutual of America.