Death and the Research Imperative (Part I)

THE OPEN MIND
Host: Richard D. Heffner
Guest: Daniel Callahan, Ph.D.
Title: “Death and The Research Imperative”
VTR: 6/2/00

I’m Richard Heffner, your host on The Open Mind. And my guest today is Dan Callahan, co-Founder and for a long time Director of prestigious The Hastings Center, renowned for its examination of ethical issues, particularly medicine, biology and the professions. Well, truth be known, Dan Callahan and I have for years now been discussing, perhaps debating is the more descriptive verb, because we’ve really not agreed all that much … at any rate we’ve been going on and one at each other about more or less the same subject, about setting limits, medical goals in an aging society. About what kind of life, the limits of medical progress. About the troubled dream of life, living with mortality. About false hopes, why America’s quest for perfect health is a recipe for failure.

Now, mind you, these have all been the provocative titles of my guest’s equally and intriguingly provocative books. And on each occasion here on The Open Mind I’ve exercised my right of seniority, having long since passed my biblical, if not biological allotment of three score years and ten, disagree vigorously with my good friend.

Yet, Dan Callahan has just now written a brilliantly concise four page piece for the New England Journal of Medicine “Sounding Board” called “Death and the Research Imperative” that feels somewhat persuasive, even to me. Perhaps even leading me to accept the notion that premature death extends only to 65. And that the bulk of our nation’s medical research funds should be spent accordingly. Meaning on those who are younger. Well, in his article, my guest argues that most of us are aware now of what he describes as the “often harmful power of the technological imperative in the care of dying patients”. That is the compulsive use of technology to maintain life when palliative care would be more appropriate. But of even greater concern now that this technological imperative is what Dan Callahan calls “the research imperative”. Let me ask him to define it and of course, to dispute it.

CALLAHAN: I mean by the “research imperative” the unkind of unlimited drive essentially to conquer death. That for medicine I think death has been for many centuries now, the number one enemy. The research imperative if not to do away with death all together, at least to do away with the causes for death. And I’ve been struck by the fact that this war against death, while it’s certainly something we all seem to welcome and we’d love to give … see the National Institutes of Health spend money on this war, I think in the end it has a very subtle and a kind of harmful effect on the care of patients at the end of life. What we really find in medicine I think is kind of fundamental schism, basic ambivalence at the very heart of medicine that the place of death in human life. The clinical side physicians these days, particularly palliative care basically say “death is a part of life, we have to accept it. If you want to have a peaceful death, you have to have some willingness to accept death as an inevitable, biological reality.” The research imperative, though really says death is … it doesn’t buy that at all, it says “death is the enemy, it needs to be overcome, it needs to be fought against”. And I’ve really gotten fascinated by what seems to be a very subtle, delicate, complex kind of struggle, which really says some basic things about the nature of modern medicine.

HEFFNER: What does it say about the nature of modern medicine?

CALLAHAN: Well, it really says, it really says that medicine first of all doesn’t quite know what to do with death. To accept it or reject it. It also really has, I think, an unclear notion of what it’s, of what it’s mission is by placing the primary emphasis on the conquest of death, I think medicine has neglected an awful lot of work, particularly research work, that could be done, first of all on getting people to change their behavior, instead of trying to conquer death by bio-medical means, we’d do much better to do research to find why people live unhealthy lives, which they often do. And secondly, because we haven’t placed as nearly as much emphasis on the quality of life. How to live … how to have a good, healthy life prior to death, but by making death the enemy, we’ve really put quality of life, I think in a kind of secondary place.

HEFFNER: Well, when I was telling my personal trainer this morning, this lovely young woman who is just great … Kerry Shiga about what we were going to be talking about, she said “never mind all that, tell him to tell them to get to the gym and get to exercising …

CALLAHAN: [Laughter] Well, that’s, that’s right.

HEFFNER: … and look for the good life.

CALLAHAN: I believe that.

HEFFNER: But what, what happens when you pose this problem to your medical friends, and you have many medical friends.

CALLAHAN: Well I … let me give a little background why I got interested in this issue in the first place. I began at the Hastings Center working on the problem of the care of the dying in the early 1970s. At that time there was already a great deal of complaining about the way people died. They were mainly dying in institutions. Too many people were excessively filled with tubes, on machines and there was a kind of revulsion at the impersonality of this. Plus the fact that many people seemed to be kept alive much longer than they wanted, or anyone else thought was sensible.

HEFFNER: That was the technological imperative?
CALLAHAN: That was the technological imperative, the idea that if some one is sick you use whatever technology might do some good, and even if you’re not sure whether it would do good, you use it anyway and the last

HEFFNER: To keep them alive.

CALLAHAN: To keep them alive. And the last thing physicians were prone to do in those days was simply to let nature take its course, stand back and do nothing. So the technological imperative was this sort of drive to say, “my gosh we have this technology, which might save a life. We really should use it”. So, really during the 1970s there were a number of reform movements to help people die better. One of them, the first and most important, and what we call the “advance directive movement”, give people the power to make some choices at the end of their life. Sign a document, appoint somebody to act in your behalf. The other, next reform movement was the hospice movement that provides special training for some people that care for the dying and really develop a different philosophy toward death. And the hospice movement began in the mid-seventies, as did the movement to empower patients. The third reform was to train physicians and other health care workers to better take care of the dying.

HEFFNER: Unhappily, I know that you belief that only the hospice solution, or approach, has worked.

CALLAHAN: Well, that’s what’s been interesting. I guess what struck me some 25 years later, somewhere around the mid-nineties, say, “my gosh you’ve been talking about this issue a long time, and yet it’s still going … we haven’t solved the problem. Why is that?” Certainly people have heard about advance directives. Most people have heard about hospice and there have certainly been some efforts in medical schools to better train physicians. But I think the hospice movement is probably the only one that’s been really anywhere near fully successful. Some 500,000 people a year now die really in the care of a hospice facility, or hospice trained people. The advance directive idea has not worked very well at all. The estimates are somewhere between maybe fifteen and twenty percent of the American population has an advanced directive. And that figure has been pretty static for a long time now.

HEFFNER: Well, you say “fifteen, twenty percent” has advance directive. But I gather you’re also concerned with the question of whether the advance directive …

CALLAHAN: Well …

HEFFNER: … will be paid attention to.

CALLAHAN: Well, that’s the … what really began coming out over the past decade or so is your chances are no better than fifty-fifty that having advance directive will do anything good at all.
HEFFNER: How do you account for that?

CALLAHAN: Well, first of all, I think many feel the great trick with advance directives is not that you have a person that will act in behalf of your estate, but that you have talked with your physician. :You have really talked this over, you’ve talked it over with your family. If people simply sign something, or appoint somebody, but haven’t talked very much, there’s a pretty good chance a) if say, you have a heart attack, nobody will know you have the advance directive. Some physicians feel that it’s their job to make these decisions and they push the … they simply ignore it. In many cases it’s just very hard to know when someone is dying. I think people have a sort of … I think, unclear notion about dying. They’re sort … the idea that you’re either dying or your not dying. But with modern technology the line between living and dying has become very, very, very fuzzy. So you can have an awful lot of struggle saying, ‘well is the patient really dying? Should we give one more shot of chemotherapy? One more … try this, try that.” And the tendency, oh, that’s the technological imperative keeps coming back. And often there is some uncertainly. And in the case of the uncertainty, the tendency is to, is to say, “well, maybe the next illness, we’ll use the advance directive, but this illness let’s give it one more …”. So, you’ve got a lot of reasons … I don’t think it’s any one thing, it’s a variety of things that seem … and then in many cases, families simply insist, “well, I don’t care what my father said, I really … I don’t think he really wanted to die the way he said he did. Let’s … doctor, go ahead, keep treating him”. So you get a lot of things come together.

HEFFNER: Well, I, I understand that and sympathize with it …

CALLAHAN: So, I really began asking the question why has this been so hard? Why … in the seventies we thought these reform movements were going to do the job. Educate people, train … better train our physicians and then it will go away. Well, it didn’t go away. So I began thinking there’s something, some deeper issue working here and that lead me to think about the whole role of research and it’s attitude toward death. And how this might be affecting sort of spilling over into the … to the bedside.

HEFFNER: Well, one of the three movements that you thought might make a change, had to do with the better teaching and training of doctors. And that you feel …

CALLAHAN: Well …

HEFFNER: … hasn’t really happened.

CALLAHAN: … what seems to take place is most medical schools now will have some segment devoted to the care of the dying patient. And, and better communications with patients. But actually that’s often in the medical school. When doctors actually become residents, they get out in the real world of medicine, they don’t see this happening very often, they don’t get re-enforcement and what I’m constantly astonished about to this very day is how little physicians talk with each other about these matters. They’ve talked technical talk … what treatment might work, what might not work, what kind of drugs to try, but you say, “well, do you actually talk with your colleagues about these difficult decisions and how to treat a patient in terms of the patient’s desires and what’s really going to be good for the patient?”. And they said, “not very much”. They’re still to this day rather uncomfortable about talking about this subject. They’re also to this day, most, not all, but a large number are uncomfortable talking with patients about these matters, also. So it’s a much tougher nut to crack than any of us would have imagined.

HEFFNER: Do you see it as being cracked, at all?

CALLAHAN: Oh, yeah. Here and there, there’s certainly …

HEFFNER: No, I, I … Dan, I didn’t …

CALLAHAN: …but I mean … …

HEFFNER: … the percentages …

CALLAHAN: As a general, as a general movement, I don’t think we’re anywhere near the bottom of this problem. And I’m not sure what’s … I mean right now there are massive efforts underway. There are all sorts of … number of foundations that put up money for better training programs, there’s a lot being done about the problem, but I think, but I think there are still some very fundamental kind of obstacles, that sort of … typical American belief in “education”. You know, if we just educate people better, this will change things. But education turns out to be very difficult in this case. But since there are so many things that so to speak can go wrong. You can educate a physician very well, but what do you do with the family that says, “forget the advanced directives”. And the physicians … what I find interesting is that the physicians argue among themselves. A kind of classic story, particularly in Intensive Care units of the sort of the primary care physician they say they know the patient’s dying, the patient is old, many organs are failing at the same time, this patient is dying. But along comes the cardiologist and says, “well, I’m not sure, we can still do something about the heart. And the liver guy says, well, I’m not ready to give up”.

HEFFNER: [Laughter]

CALLAHAN: So they get in arguments as to whether to try one more thing. And I’ve sat in on many of these discussions and its absolutely fascinating. If the body is looked at as just a collection of organs, then the specialists can come in and say, “well, I can still do something for that organ”. Whereas I think the more sober observer looking at the whole scene says, “you know …”, and using the experience of many years, will basically say “this patient is not going to make it. We might get another day, or another week, you can always get a little bit more … but basically the course is downhill.” And that’s by virtue of the possibility of arguing about whether a little more can be done, and here the hope and medicine’s …, you know, believes in hope and that the technology kind of enhances the idea of hope that there’s the possibility you might do something a bit more is a very powerful lure to trying to do something a bit more, even if the odds are pretty poor.

HEFFNER: What you’re concerned about I gather is that we are focusing on those end years in that way with our research and our research monies and we are not doing enough about making life better in the earlier years.

CALLAHAN: I think … well, in great part that’s it. We … well, let’s put it this way, most people now die in old age. Most people … three-quarters of the people who will die beyond the age of 65 now and yet we basically … so an awful lot of disease that we’re spending research money on are really going to benefit the elderly, more than young people, although young people obviously have cancer and heart disease. So, I guess I felt that we’d be much … I think medicine really does have this sort of unlimited drive going against death, but by virtue of that it means that a lot of other things that make life miserable tend to get us, you know, put in a secondary place. And that I think is harmful.

HEFFNER: Well, in this piece in The New England Journal you write, “we should promote the idea that research should focus on premature death”. And then you quote the Federal government as now defining a premature death as one that occurs before the age of 65 years. You go on, if I may, “this definition is obviously arbitrary, but not necessarily unwise or capricious. Since the concept of a premature death is only in part biologic and is more obviously cultural, it might best be understood as a death that occurs before a person has lived long enough to experience the typical range of human possibilities and aspirations. To work, to learn, to love, to procreate, and to see one’s children grow up and become independent. On the whole, I believe, a lifespan of 65 years is sufficient for these purposes, even if most of us would like to live longer”. Now, it may not be fair to you to say that parenthetically you say, “I write this as a person who is 69 years old”. So, you’re passed that dividing line.

CALLAHAN: MmmHmm.

HEFFNER: What chance is there, despite the Federal government’s definition that we, as a people will embrace that notion?

CALLAHAN: Very small. Particularly now since medicine can do an awful lot for older people, keep them alive longer and keep them alive in better health than was once the case. My point isn’t so much that they, individually should only want to live to be 65. My point is that when you think about what research to aim at, I would say that having struggles against death after 65 doesn’t make a lot of sense, when you’ve got a long number of people who haven’t even made it to 65 where you could put the money in that direction. And, I, I guess I would put the research money into working against premature death and, but at the same time, research into improving the quality of the lives of elderly people, but not necessarily working to extend the average life expectancy. There’s a lot of interest these days in the possibility we maybe could get people to 100 or 150. Well, I think that’s a foolish kind of goal. The people … I don’t think … most people probably wouldn’t want to live that long. But the real problem with old age isn’t that you die. The real problem is a miserable old age, I think.

HEFFNER: You don’t think that it’s … you really don’t think that it’s just nonsense. You think it’s dangerous, disastrous for us to have that goal.

CALLAHAN: Well, I think the problem is … for instance, let me give you a simple example. We have paid very little to children’s dental problems. There are 100 million children in this country that don’t have dental insurance. A very large proportion of children still get dental carries, they … a number of minority children actually lose their teeth before they’re even into their adolescence. We’ve spent very little money trying to change this situation. Very little money in research in how to get people, parents to help their children to take better care of their teeth. But it seems unexciting … a teeth problem … that’s you know, my gosh, let’s really worry about … how about breast cancer and prostate cancer. Well, the problem is … a simple thing such as dental care makes an enormous lifetime difference. And good dental care for children would be … you’ll have a long term pay off, but it’s just been neglected as a research area and as an area to spend any money on in our health care system. I began noticing these disparities and my gosh, something is crazy about this health care system. And our particular values. If we so much make death the enemy, we are almost inevitably going to ignore all those things that seem like minor, minor problems compared with the fact that people die.

HEFFNER: Well, you use the magic word “values”. We’re really talking here about a philosophical fix.

CALLAHAN: It is a philosophical fix. But very striking medicine historically didn’t take the struggle against death seriously until the sixteenth and seventeenth century. Before then, if people … of course, they couldn’t do anything and the aim was simply to help people to die as comfortably as possible. But then medicine and science gradually said, “my gosh, let’s take on death” and began to. And I think this kind of struggle against death has, so to speak, gotten out of control. And we really don’t have a very good sense of what ought, I think, to be appropriate priorities in research.

HEFFNER: Practically speaking, what do you think could and what would you have happen in terms of public policy?

CALLAHAN: I would really, first of all, want to see a much greater focus along … two or three things. First of all, the behavioral causes of illness. One thing that’s very clear now is that people who live healthy lives, people who exercise, eat properly, don’t’ smoke, don’t drink to excess have a much greater probably of living, not only a longer life, but a healthier life along the way, and most importantly, and interestingly, and dying a better death. Now why this is the case, but it does seem that people who live long, very healthy lives, tend to die more quickly with less pain and suffering. This is something of a mystery. But I think many of us, if you think of people who’ve made it into their nineties. Very few of them have had much to do with medicine. You don’t make it to the nineties by hanging around intensive care units.

HEFFNER: You write that, and it’s a very telling point.

CALLAHAN: And if you think of it, think of people … I started noticing this in people I knew and it turned out that there is now some pretty good evidence that people who really take very good care of themselves will live longer and they do die more quickly and more peacefully. Now and somehow that’s where I put the research, how in the world can we … right now we spend a huge amount of money. And great excitement these days is genetic research. Much more important, I think, would be behavioral research. Why in the world, for instance, are people these days exercising less than they did ten years ago? Why do we have more obesity than we did now than we did ten years ago?

HEFFNER: Are those figures right?

CALLAHAN: Those figures are absolutely right. We’re doing worse … obesity has significantly increased over the past decade. The only thing, the only place we have made some progress is with smoking. That’s come down. Although with women it hasn’t come down nearly as fast as with men. But, but on sort of basic lifestyle habits, it’s still a … it’s a bad scene out there. So I would feel why in the world is this? Why do people have such a difficulty taking care of themselves. I don’t think it’s just that they lack the will, but I think we’ve created a whole society … that’s another story … makes it very difficult to take care of ourselves. So, research on behavior leading to poor health.

HEFFNER: You meant by that aside that we push, commercially, the behaviors that are so negative.

CALLAHAN: Well, it’s not just we push … we partly do that. For instance … there was a very interesting seminar at the Centers for Disease Control and Prevention, where I serve on the Committee on Obesity. And they were particularly interested in obesity among children which is very radically … something like 30 to 40% of children now are overweight in this country. And they gave three primary reasons. There’s a very significant increase in watching television over the past decade from an average of three hours a day to five hours a day. Secondly, a large number of children, particularly by adolescents fix their own meals in microwave ovens. They come home and the parents say they just let them fend for themselves, and they tend to poorly. And the third reason is basically a lack of exercise. And most strikingly it’s this enormous dependence on the automobile. For instance, something like 75 to 80% of children who live less than one mile from school take a school bus. Where just that simple walk every day would make a huge difference. I was recently in Prague in the Czech Republic and I said, “well, what do you do about school buses? And how do you get kids to school?” They said, answered, “What’s a school bus? They walk, they walk or they take the public transportation, we don’t have school buses here”. And of course, their kids aren’t overweight. It’s very striking. Because they walk. So, you’re really talking about some very structural changes, you can’t just … a lot of parents don’t want their children to walk because they think it’s dangerous …

HEFFNER: Safety.

CALLAHAN: … and of course, in a lot of our suburbs they don’t have to build sidewalks. And the schools, and the town won’t spend the money for crossing guards and there are all sorts of … so you have to … you can’t just preach walking, you’ve got to say, “All right, we’re going to have to do a lot of … change a lot of other things at the same time. Anyway, so I would … a lot more work could be done in that area. Secondly, really, the whole range of conditions that affect quality of life. And this would be something like dental conditions. They … I mean that’s a medical condition, but basically they don’t … dental disease doesn’t kill people, but it sure can make people miserable over time. So we need more research in that. We need more research in rehabilitation. People will get sick and/or become disabled, but we still don’t know enough about how to get them back on their feet walking again, or so forth. So there … and I suppose more research on palliative care at the end of life, how to deal with people’s pain and suffering. In short it’s not hard to come up with a kind of agenda of things that comparatively speaking … it’s not that we don’t spend money on some research, but in terms of priorities, they’re much lower. There’s a kind of attitude that quality of life issues are … they’re simply not as important as keeping people alive in the first place. But we’re doing a pretty good job now of keeping people alive. With most of us will live into old age, and the point is how to get into that old age in better shape and …

HEFFNER: And how to get out of it in better shape.

CALLAHAN: And how to get out of it in better shape. [Laughter] And I suppose ironically, you want to try to die as healthy as possible, if you’ve been sick a lot before you die. I think the worse kind … I think the death most feared is the death that’s preceded by a great deal of long term, drawn out suffering from a chronic disease, where you go gradually down the hill. And that’s a great fear for many people.

HEFFNER: Dan, we have just a minute or so left. When I asked the question about the philosophic basis of this, you, you, you didn’t get to the heart of the matter …

CALLAHAN: Well, I … to me the philosophical basis is really is, is partly a question of what we think science and medicine are all about. Do we think science and medicine are ultimately all about changing the human condition. One part of which is to do something about death, to push it back further and further, or to get rid of it altogether. Or do we think medicine is essentially about helping us to live better lives, but within a kind of finite lifespan. What, what is the struggle, what is the essence of the medical struggle? I think the essence of the medical struggle is a struggle for good health, rather than a struggle against death.

HEFFNER: It’s funny, you don’t say the essence of it is the concept, our concept of life. And the place of death in it.

CALLAHAN: Well, all right, I guess in … I could put it that way, too. But it seems to me that the whole … what we want in a life is at least as far as our body and our mind are concerned, is to be in good shape. So to speak, our body, we don’t notice our body, we can do what we want and our body is not getting in the way. Where we can think and feel the way we want without having, being emotionally oppressed in the process. And if everything is working well, you don’t know notice your body. Your body’s just … you take it for granted. That’s terrific.

HEFFNER: Dan Callahan, thanks again for joining me on The Open Mind. And thanks, too, to you in the audience. I hope you join us again next time. If you would like a transcript of today’s program, please send four dollars in check or money order to: The Open Mind, P. O. Box 7977, F.D.R. Station, New York, New York 10150

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

N.B. Every effort has been made to ensure the accuracy of this transcript. It may not, however, be a verbatim copy of the program.