Living with Mortality, Part II

THE OPEN MIND
Host: Richard D. Heffner
Guest: Dan Callahan
VTR: 9/15/93
“Living With Mortality, Part II”

I’m Richard Heffner, your host on The Open Mind. And this is the second of two programs on the subject that impacts profoundly upon those of us who are or who know and cherish those who are indeed pressing now upon or beyond our biblical and biological allotment. My guest again is Daniel Callahan, the director and co—founder of the Hastings Center, renowned for its continuing examination of seminal ethical issues in medicine, biology, and the professions. The author of Setting Limits, about what our medical goals can legitimately be in an aging society, and of What Kind of Life, about the actual limits of medical progress, Dr. Callahan’s newest Simon & Schuster volume, The Troubled Dream of Life, is subtitled Living With Mortality. And today I want to go back now to the exchange between us that this compelling book occasioned on The Open Mind last time.

Dan, I’m glad you stayed. So many questions are remaining. I’m 68., Will I get the kind of ICU care as you think of the way medicine should be practiced? Or will I have to be 69 before they say, “He’s so far over the hill we can’t, in your estimation, devote the resources, that are limited in this nation, to his survival.”

CALLAHAN: Well, I suspect as time goes on, if not for our age group and our generation, certainly for the baby boomers. They’re going to race even much tougher limitation of resource. Because they’re a smaller group of young people supporting a much larger group of old people. And 20 or 30 years from now the medical progress will have moved things even along further, so the ways of keeping you or your, perhaps your children alive will have probably become more expensive, and maybe, hopefully with better outcomes, but you don’t know. My own guess is that we’re beginning now to run up against some fundamental limits of medicine. Some of the limits are economic. Some of the limits are probably going to be whether you can really get a very good outcome with certain people of certain age. What’s happened earlier, we’ve been kept alive up… You’ve gotten to be 66 because you are the beneficiary of good public health, sanitation, nutrition, and a lot of other things. And those are the things that have made the real difference in extending life expectancy, And now you’re going to be more the beneficiary of medical technology of one kind or another. The question, I think, we’re going to have to race as a society is how much do we want to invest in figuring out ways to keep you going. Do we want to see death as, is death to be endlessly seen as the enemy? Whether you’re 68, 78, 88? Certainly you would think or death as an enemy for a ten – year – old or an eight-year-old. Do we want to see it as equally an enemy for a 98 – year-old? Do we want to see it at the bedside with that 98 –year-old person? Do we want to see it as a research goal? I mean, I’m fascinated, I always think there are two doctors at the bedside: there’s the doctor who’s dealing with the dying patient, and says, “Has this patient’s time come? What should we do?” then there’s the research doctor who says, “Well, ten years from now patients like this won’t die. We’ll give them another ten years.”

Our fundamental social question is going to be: Do we want to, how far do we want to right death? As we organize our medical system in the future, what emphasis do we want to give to the extension of life over against, which would be my focus, the improvement of the quality of life. My own vision of the future would be that we will spend less money in trying to keep people alive, and that is to give them more years, but we’re going to spend a lot more money on trying to figure out how to reduce their illness and their disability, the things that we now think of as a burden to old age. And we’ve had a medicine that for the past 40 or 50 years has essentially been engaged in the struggle against death. Our National Institutes of Health gives them the largest portion of its research money to the diseases that kill people. A much lower proportion to things that simply ruin the quality of life: arthritis, osteoporosis, Alzheimer’s, things like that

I would like to see a change in our priorities. A change which would say, “Look, what’s really important is how people have a life, not that it’s of a certain number of years.”

HEFFNER: Okay. But now I’m going to pin you down. There’s a certain bit of surgery that I, as a coward, won’t experience because I keep saying, “I’ll probably walk out in the street and be hit by a truck. Why go through this surgery before then?” All right. Heffner walks out on the street, is hit by a truck, but survives, Survives long enough to get to the hospital. There, as they are about to take him in and start to work on him, they see on his dog tag that he is 68, Do they say, “Forget it, No measures that are extraordinary for him. No measures, really, that are costly, for him,” What’s your answer to that?

CALLAHAN: My answer to that is I can’t answer the question in isolation, My answer is; What do you want an overall health care system to give? What priority should the 60 –year- old person, 68-year-old person hit by a truck have over against the needs of a ten-year-old child who needs, who fell in a group that needs Immunization, over against the needs of that same ten-year-old child who is in a classroom and has a terrible school? My approach is not to look at these issues in isolation; what should do about Richard Heffner who has been hit by the truck? But where, as we organize the health care system and set up priorities, do we want to put, first of all, the old versus the young, those who are acutely ill, how much money do we want to have to give to terrific emergency rooms, or a helicopter, even better, to take you to the emergency room, over against other things in society…

HEFFNER: Yeah, but Dan, but Dan…

CALLAHAN: I’ll give you my priorities, but…

HEFFNER: Wait, wait, wait, wait a minute wait a minute. I used me just to put you on the spot. I could have used anybody in this studio.

CALLAHAN: You can use me. (Laughter)

HEFFNER: Right. But let’s not. Let’s use 68—year-olds.

CALLAHAN: Right.

HEFFNER: Let’s use those who have reached 60, 65, 68, whatever.

CALLAHAN: Then I would give them everything that I would give a ten-year-old. Sixty, you know, in the sixties, to my mind, the real problem doesn’t arise really to the eighties. I mean, people at 60, if you’re 68 you have a good life, your life expectancy statistically is in the vicinity of 12 or 13 years. You have a good chance, if you’ve lived to 68, of living to be 83 or 84. So you’ve got a…

HEFFNER: Is this the life…

CALLAHAN: I think that certainly would make a difference. If you are deciding how, if you have limited amount of health care resources, and you have ten dollars available, you are more likely to invest that ten dollars in a child who has a whole lifetime before him or her, and who is yet to have the opportunity of becoming an old person. You’re more likely to say, Lets give more of that ten dollars to that young person than to the person like yourself who has already lived, has had the advantage of living a full life, I once heard somebody say, somebody once said to me, ‘Nine minutes old, 90 years old, we should treat everybody the same. I don’t think that makes sense. Because it seems we want, one of the first priorities of the health care system would be to enable the young person to become an old person, to avoid a premature death, Now, once you’ve avoided a premature death, which I would say would be somewhere roughly, if you get to be in your sixties you have had a pretty good chance to have a pretty good shot at life, your death would not be considered premature. Maybe they’d say “Oh, he could have done more, and he was still in great shape.” But we don’t see it tragic the way a child’s short, the child…

HEFFNER: You’re saying 80? You’re saying 80 is…

CALLAHAN: I think it will probably shift over time, but at some point, if we are forced into really severe limitation of health care resources, we might say, “Look, if you made it to 80, and we have all these other needs of younger groups out there, were not going to cut you off, but we may want to cut you off some of the very expensive things that would at best only give you a few more years of life. And we’re doing that not because we don’t like you as an elderly person, but we think we’ve got to worry about that young person who has yet to get to your terrific state of having made it to be 80.

HEFFNER: Okay. Enough, because we’ve identified how it is that you feel in very precise terms that way. Let’s go back to this fascinating discussion of yours in The Troubled Dream of Life: Living with Mortality, to this matter of how we can face death in a way that is not as terrifying. What can our society do with this? First, what do you mean by “a tame death” and “a wild death?”

CALLAHAN: Well, open the book by making use of the work of historian Phillip Arias, who really did a wonderful study of the history of death In Western society. And think he made a very good case that prior to our modern scientific and high—tech medical times, people by and large, interestingly, died quiet, peaceful deaths. And for one important technical reason: they tended to die of infectious disease. Which meant that you got sick, and you either died pretty quickly or you got well pretty quickly. And if you got well, you were likely not to have any lingering consequences. But what happened is we got rid of those diseases. We moved ourselves into the whole arena of the chronic and degenerative diseases of aging societies where the death is much slower, where things can be dragged out and technology allows us to drag things out. And he used the term ‘a wild death,’ It’s a death in the company of technology where we no longer accept it because medicine has said, “Don’t accept death. Fight death.” We…

HEFFNER: When the bells are ringing. The emergency bells are ringing.

CALLAHAN: The emergency bells are ringing. We also, interestingly, in earlier cultures death was a much more public event. It was understood. People wore armbands to indicate family members. Women went into mourning and they wore certain kinds of clothes. What we’ve done with modern death, we hide it. We put it behind the closed doors of hospitals. And then after a person has died, along come the funeral directors and they, if we even look at bodies anymore, they make the body look pretty and they keep with the whole thing. And of course now what’s interesting, we have more and more memorial services so we distance ourselves from death all the more. And a wild death is really one where people, first of all, don’t accept it, They think that, think, modern medicine has led us a little to the view that death is kind or an accident, that It shouldn’t have happened, or with better research it won’t happen in the future, In an earlier era they couldn’t kid themselves, Death was a fact of life and it was a fact of life right across the,,. Your children died, your babies died, your young teenage children died, you might die in childbirth, it was spread across the wide spectrum. In one sense it’s enormous progress that that no longer happens Most people now die in old age. Over 75 percent in this country. And that’s a terrific progress. But that we’re much more ambivalent about the whole thing is peculiar because the medical progress, we’re more worried about how we die because we know we can be dragged and stretched out on a kind of rack of medical technology. We rind it hard to talk about it because we don’t have any common cultural meaning. All other societies have religious that allowed people that speak in, to go through certain rituals together, to have a kind of a language and a way of talking about death with each other, we don’t anymore. We’re nervous about the whole subject.

So a wild death is really a death in our society which is a death that does not seem to have any meaning or real place in life, and it’s one about which people become enormously anxious because they’re not sure whether the great medicine out there is going to help them or harm them.

HEFFNER: Aren’t living wills, I thought that living wills and the appointment of surrogates as a means of dealing with that. In The Troubled Dream of Lire you seem to say they’re not worth all that much.

CALLAHAN: Well, it’s one of those terrific ideas that simply hasn’t produced all the good. It’s important we have living wills. And I don’t want to say we shouldn’t. But the point is, I think there is a belier if we gave everyone power to make these decisions we’d get rid of a lot of the possibilities. Like all other wonderful dreams, that is not… First of all, the majority or people have not signed them and probably never will sign them. Only 15 or 20 percent of the people have even signed advance directives or living wills of one kind or another. But what I’m finding increasingly is that even the people who have signed them find that that does not by any means solve the problems. See, most people with the living wills say, “If I am dying, I don’t want a respirator, don’t want artificial feeding, I don’t want all of this or that.” The problem is that because of the medical technology, all of, the borderlines between life is getting fuzzier and fuzzier. A lot of the debate is, “Well, he said It’ he was really dying, he didn’t want.” But the doctor says, ‘Well, I don’t know that he’s really dying. We’ve got some other things we can try here.” Or the heart, cardiologist says, ‘Well, yeah, in one sense he’s dying of heart disease, but I can do something about that.” Some other doctor might say, “Yeah, but in general he’s falling apart.” But each specialist says, “Well, I can still do something.” So there are these enormous struggles that go on at the bedside whether the patient is even dying or not. And the consequence of this is more and more people find that it’s nice to have them, they provide some protection, but the really tough problem is not when you’re dying, it’s when the doctor says, “Well, you’ve got a ten percent chance that this treatment will work, or 20 percent.” Well, that’s not in your living will. That’s not exactly what you had in mind making that kind of… A stroke, a perfect example. A stroke. You have a stroke. The doctor may say to your wife, “He’s got a living will.” “Yes, he didn’t want… And the doctor said, ‘Well, he’s got a pretty good chance of bringing him back. I’d say 50 to 75 percent. And if we bring him back, well, maybe probably 50 percent that we’ll get him back as he was.” Well, we don’t write living wills to deal with all those murky, confusing probabilities and statistics when the doctor can’t give you any, he’s always sort of very loose about. And that’s where it gets tough and that’s why the living will, right, it’s sort of a nice legal fix. Well, the reality is still more complex than I really wish,

HEFFNER: Oh, sure when I drew up a living will just some months ago, as tried to parse the sentences and write my own words in place of lawyer’s words, I realized

CALLAHAN: The one instruction I have given my wife, which is what to do when there is uncertainty. And have said, ‘When in doubt, don’t treat.” And that’s my way of cutting through this problem. Because right now, the bias in medicine, this is the struggle against death, the bias in medicine is when in doubt, full court press. I sort of want things the other way. If the situation is murky enough that you’re not sure, then don’t treat.

HEFFNER: Now, Dan, Is that again because what you’re thinking of is the drain on our national resources, that you and all the others who are in that period, going to, instead of saying, “Don’t treat/Treat.”

CALLAHAN: No, I would say, I would, I say that in great part because would like to die a relatively clean and simple and quick death if at all possible.

HEFFNER: Then why do you…

CALLAHAN: But I would also say in addition to this I’m concerned about the resources, but it’s a secondary consideration.

HEFFNER: Okay. You’re concerned about how you die.

CALLAHAN: Right.

HEFFNER: Why are you then so opposed to those who say, “I want to die — the phrase is usually – “with dignity and I hope that someone will help me rind my way out of this morasse, this veil.

CALLAHAN: Well, I reject it for two reasons. First of all, think it reflects a kind of attitude in our society that somehow one can’t have dignity without control. But I think medicine itself has fostered the notion that if we could only control life and death through science, wont things be terrific. That whole enterprise, I think, went far, and still goes too much, And now we want to clean up where medicine has failed by bringing in euthanasia and saying, Okay, if it didn’t give us birth control at least we have this one last recourse thing available to us.” But I think that still feeds into this kind or obsession with control, which believe in itself is a harmful thing.

But secondly, I guess I really, don’t see, see this as a social, a sort of social, a bad social virus. If we allow doctors to kill us or allow doctors to give us pills to kill ourselves, I think we introduce something very dangerous into society, think the potential for abuse is enormous, I believe from the Dutch experience we already know that it quickly moves from a voluntary thing to begin to do it out of mercy for people who don’t ask for it. I think its, to my mind, we do a terrible job in our society already in dealing with killing. We’ve done a terrible job, we allow killing, capital punishment, we allow killing in self—defense. We allow killing in the name of just warfare, those are sort of three traditional Western reasons for legitimate killing. I don’t like that. But we’ve done a lousy job with all of them. Every one of them has been subject to kind of enormous abuse and corruption. I hate the idea that we’re going to have a fourth category of killing, sort of consenting adult killing or medical killing. And it seems to me that the social harm, first of all, technically, I believe the arguments of most physicians saying we can in fact control most pain and suffering with physicians. So we’re really only talking about a small number of people who cannot be reached. And I would certainly agree that there probably are some people

But I don’t think we should change our cultural and social traditions and introduce a whole new form of legalized killing to deal with a very tiny percentage of people.

HEFENER: Yeah, but now I take and turn the argument around, and I say, “Callahan is a control freak himself. He wants to control my ability to control my life.”

CALLAHAN: That’s true. Because I think my children, my society, my friends will be influenced by your desire to control your life. I don’t see your decision as private. I see this as one of those peculiar private situations that affects the rest of us. Because in order for you to have a right to control your life, we have to change the nature of medicine as a profession, we have to change the rules about who can and cannot kill each other. All of this begins to affect my society as a whole. Now, I make a distinction here. tf you want to commit suicide and jump off a building and do it by yourself, will not stand in your way, and I will not pass a law against your right to do that. It’s when you want to bring in medicine, you want to bring in people to help you, at that point you’re out of your life and you’re into my life and my culture and my society. And I have to ask the question; what kind of a culture and society do want to live in? I mean, think back 30 years ago. Southerners and people used to argue on civil rights. They wanted pro-choice in the South. “We’ve got our ways and our customs down here. You don’t have do it, and let us be free.” And finally we just said, “No. There’s a social harm in certain kinds of free choice.’ We don’t allow dueling anymore in our society. Why not? If you believe people have a right to vote… What’s wrong with dueling? If want to, you and I decide, well, its, what if we want to be my slave? What if you and I have a, want a consenting adult contract that you will be my slave? We won’t allow that either because we think there’s something inherently corrupt about my having the power to be your slave owner even if you’ve agreed to be my slave. So we limit freedom of choice partly because we think the social harms are…

HEFFNER: But Dan, the question of slavery, our inability to sell ourselves into slavery doesn’t really stem from the example that we’re setting. It stems from something more fundamental. You are… It’s interesting to me…

CALLAHAN: I’m using the analogy simply that things that people think are private like doing what I like with my own body actually are, I think, in the end are very social, they affect lots more than your life. And that’s, and I think euthanasia will in fact affect everybody’s life and not just the people who want it.

HEFFNER: You’re moving further and further away as a philosopher, I gather, from a kind of utilitarian concept of liberty. John Stuart Mill is put on a back burner) as far as you’re concerned,

CALLAHAN: No, no, no. But John Stuart Mill said we should be free to do as we please as long as we do not do harm to others. I think you’re…

HEFFNER: You’re expanding the concept of what harm were doing to others.

CALLAHAN: Yeah, absolutely. Because I do think that there are lots of, I believe that we would do harm to the social fabric, to our common life together if we put physicians in the position to kill people, which they have never historically done. If In one sense we begin empowering a new form of killing in societies, which societies have prohibited. I think it’s important to stand in the way of that because I can’t see any good coming from it. That’s essentially it. Even though personally I might like it. might say it’s a terrible thing. But I’m really trying is, what’s good for us as a society. And it seems to me that there are some exercises of liberty which really do harm. I want to expand the notion of harm very much) because there are things that we should know about when we give enormous power to one human being over the life of another human being, even in the name of choice and voluntary decision making, we often end by doing, we do harm to everybody else in the process.

HEFFNER: Do you find yourself moving further and further in the direction of, let me use the word “control.” Because that’s essentially what you are talking about. You really talk about controlling the allocation of our national resources in terms of treatment medically. You talk about control in reference to euthanasia, Is this something that an odyssey that Callahan is making?

CALLAHAN: I suppose the question of control has fascinated me for a long time. How much of it and what kind we ought to have in this society. I suspect that, concerning the allocation of resources, because medicine is so expensive and consumes such a large proportion of our resources as a country, we have to control. We know the costs are too high. We’re trying to find a way to put limits on it. I guess I would like a lot more freedom, or less control say from people at the end of life to make decisions. I wish people weren’t forced so coercively by medicine to have their lives extended. And that’s part of the weight, its not the doctors conspiring, it’s the weight of the medical establishment which basically wants to keep us alive, and we’ve supported that. I would like people to have much more choice about saying no earlier on. wish there were less pressure on us to keep going and to use those ICUs. So I’m all in favor of an expansion of living wills. The question, but you have… But I don’t think you can answer the question yes or no for it. Because some areas of control are going to be important. Resource allocation. I believe in health care rationing, and that’s going to be a form of control. And at the same time, I believe in a lot of choice at the end of life, but not the choice to bring in a doctor to kill me. So I’m going, hope in some coherent way, but in different directions at the same time.

HEFFNER: Dan, don’t you feet that it is likely in our society that only those who have some involvement with philosophy or Ideology or religion are going to be able to make sense of what it is you’re saying?

CALLAHAN: Well, my own experience in talking with people is that

these issues lurk in everyone’s mind, and particularly become strong when a lam fly member or loved one dies, that these issues force themselves on people whether they like them or not. And guess what I would like to see would be for us to have some common way to talk about these issues. We want to push the problem of death into the private sphere. We say, that’s up to you. Or if you have a religion, then okay, do it that way. I suppose one purpose of my book is to see if we can have a more common discussion of the meaning of death, how we should think about death. In one sense that the whole discussion of living wills has turned death into one more choice issue. We made it a question of civil liberties. And whereas I think in order to talk about that civil liberty you have to talk about death itself, And I wish we could sort of un—private, we’ve made it private Death has become private. I think we ought to make it public again and say how do we all live together in mortality and within our limits and how do we comfort each other when we die, as we know we must? And were not good at that anymore. We used to be good, but were not good anymore, and Id like to get back to that.

HEFFNER: That’s the point at which I say thank you for The Troubled Dream of Life, and thank you for joining me on these programs, Dan Callahan.

CALLAHAN: And thank you.

HEFFNER: And thanks, too, to you in the audience. I hope you’ll join us again next time and if you’d like to share your thoughts about our program today, please write The Open Mind, P.O. Box 7977, FDR Station, New York, NY 10150. For transcripts, send $2 in check or money order.

Meanwhile, as another old friend used to say, “Good night, and good luck.”