GUEST: Alex Capron
I’m Richard Heffner, your host on The Open Mind. There was a time when the conduct of biological research and the practice of medicine itself were both functions almost entirely of the investigator who represented the ultimate authority of the scientific community, or of the physician whose practice seemed to make him perfect too, and endowed his every act with an authority that just about shouldn’t be challenged. For good or for bad, probably for both in a world of ethical as well as informational ambiguities, that’s no longer so much the case. And recently the White House received a report on this nettlesome subject area from a group of distinguished Americans who made up a presidential commission for the study of ethical problems in medicine and biomedical and behavioral research. As Morris Abram, the chairman of the commission, indicated to President Reagan, “The Basic American values of liberty, fairness, compassion, and respect for human dignity have recurred in many settings throughout our work. In light of these values, we have addressed many of the most troubling issues facing Americans in the last quarter of this century, such as when, if ever, should life-sustaining treatment be foregone; who should bear the costs of injuries to human subjects in research; should society ensure that everyone gets health care, and if so, how much; ought physicians to tell their patients the truth, even if it is very dismal; what should be done about attempts to remake human genes? The executive director of this study, a longtime scholar in these areas of such profound concern to all Americans, is Alexander Capron, now professor of law at Georgetown University, and Professor Capron is my guest today on The Open Mind.
Thanks so much for joining me. I think, Professor Capron, that I envy someone who was for so long involved in the kinds of problems that you deal with here in this country, the volume of your report. And I think it may not be unfair if I were to go through them. I know that we can’t go through them all, but I would ask you, how did you deal with the first question, for instance: When, if ever, should life-sustaining treatment be forgone? What is the basic ethical imperative that lay behind your conclusions?
CAPRON: That report really grew out of several of the earlier reports, and it’s best, I think, to see it in that context. The first impetus for that study came from a mandate that was in the statutes setting up the commission to study the question of defining death. That’s an issue mostly because techniques of keeping the lungs working and the heart working can maintain what we’ve thought traditionally of as the vital signs of heartbeat and breathing in a patient who is really dead, is basically a cadaver that’s artificially ventilated. And as the commission and came up with a recommendation in the form actually of a statute on which the American Bar Association, the American Medical Association, the National Conference of Uniform State Law Commissioners agreed, and it’s been put forward and now adopted in 14 states. As we worked on that, it seemed that that issue is on some way not that difficult, because there’s very broad agreement that what we need is a new means of measuring the occurrence of the phenomenon of death when the old means is obscured because of this machinery. The more difficult issue that we saw as we looked into that intensive care ward and was the people being, the bodies — some of them people, some of them now dead bodies — being worked on, was the question: What about the person who is permanently in a vegetative state, as it’s called by neurologists, meaning permanently lost consciousness? Or what about the person whose course of treatment isn’t improving? Those are the harder questions.
We were also asked in our statute to study the issues of informed consent. That is to say, what we regard as the dialogue that should go on between the physician and the patient prior to initiating treatment or a diagnostic procedure. And we came up with certain conclusions there about the importance, both of good communication and of respect for the patient, and also the need to serve the patient’s wellbeing, which can sometimes set up a certain tension. And we also looked at the issue of access to health care and confidentiality of medical records and so forth. In a way, all those came together on the difficult subject of deciding when or whether to forego life-sustaining treatment. And we drew from each of those areas both as to the certainty of the medical diagnosis, which is very certain in the case, absolute certain, basically, as certain as things can be in medicine, in the determination that death has occurred, somewhat less certain with some of these prognostications about patients who are doing less well. Then the question of informed consent comes in here. And what we said in that report on decisions to forego treatment was that the same principles that apply in all of medicine apply when you get to a question of life-sustaining treatment. So that the patient who is competent and is able to express the views and engage in that dialogue with the physician, who says, “The time has come. I don’t want more treatment,” or, “I know I’m in the hospital, I’ve got metastasized cancer, we’re trying to treat it, and I want that treatment. But I recognize that my life is precarious, and if I have a heart failure, cardiac arrest, I don’t want to be resuscitated. I’ll let that be the end, the time has come,” or whatever the patient is saying, then that’s the situation in which you apply that notion of informed consent and the patient’s right to make that choice about their treatment in the case of life-sustaining treatment. There’s a presumption in favor of life-sustaining treatment, but the patient can overcome it. I think that’s the core conclusion of that report, and we drew it as a practical application of a broader, more general principle about informed consent.
HEFFNER: Well, it is the question of what the basic moral imperative is, that I think interests most people in what you’ve done. Where do you begin? With the concern for the individual, as you’ve said, or with a concern for society that’s made up of many individuals making individual demands upon society for medical treatment, for concern, for attention?
CAPRON: Well, the notion of informed consent doesn’t say anything about the demands that a person can make. It is in effect a way of saying, to the extent that there is going to be an intervention, the person should be able to determine. Not as an isolated person. Sometimes the term “personal autonomy” is used. And I think in some of the philosophical literature, perhaps in some of the legal literature too, its been pressed as though you’re talking about a person in idealized state as an individual autonomous from an influences or control, free will in some cosmic sense. And that isn’t really what we think is at work here. People make these decisions as parts of families, as parts of other groups, in the context of a treatment setting in which there are nurses and social workers and physicians and others with whom they interact and from whom they get advice and who they have desires to have relationship with. They don’t want to do something that’s going to make those people very angry. That’s a big constraint often on people really deciding what they want. They’re concerned what other people think. And that’s perfectly legitimate. Medicine isn’t separated from the rest of our lives, and we do that throughout our lives, we make decisions. So it is starting from the viewpoint of autonomy, but it’s not an autonomy of cutting off the individual.
On the other side, when we address directly the issue of access to care, it was another thing we were asked in the statute to address, and we wrote a report on that. And that comes into these concerns about life-sustaining treatment, as it does anywhere. We didn’t say in that report that individuals have any right to demand of society all the treatment they want or all that they even need or might benefit from. We talked instead there in terms of an obligation, an ethical obligation on the part of society to see that access to care is equitable. And then we said, well, equitable in what senses? Access to what? And our explanation of that was, access to an adequate level of care without excessive burdens, recognizing that there may be some care that goes above that adequate level. I’m not talking, when I say “adequate,” it shouldn’t be equated just with basic care or ambulatory care, but it’s difficult to define. And we can talk about what that means. But it’s a concept of adequacy which is a floor below which no one should fall, and where society’s resources should go first.
HEFFNER: But now, wait a minute. There seems to be tensions there between adequacy and the question of equitable care. Now, which is it that you came down on the side of?
CAPRON: Well, now… What we said was, to be equitable…
CAPRON: …society should ensure that everyone has access to an adequate level of care. We didn’t, we said “equitable,” we didn’t say “equal.” But often people have talked in this area, as is appropriate when one’s talking about rights, for instance, voting rights or the like, that everyone should have equal treatment. One man, one vote makes sense when you’re talking about the ballot box. But people have very different means for care. And if you talk about equal treatment, it would be very hard to know what you mean. That we should all get 3.2 hours of physicians’ attention per year?
HEFFNER: No, no, no…
CAPRON: Or that we all get $100,000 lifetime treatment, or what? So when we said “equitable,” that was the beginning point. And when, to define what equitable is, we said that means access to an adequate level of care. Now, what adequacy here means has to be fleshed out in the terms of specific proposals. And we weren’t writing a health agenda. That is to say, we were not saying, “The right way to do this is competition, or the right way to do this is perspective reimbursement of medical costs, or…” That’s for other people who are in the health policy side. And we were a commission on the ethics. What we said was, when you’re comparing programs, when you’re deciding, do you want to have program A or program B or program C, besides asking yourself what’s the economical effect, what’s the medical effect in ethical terms. Namely, does one program versus another increase the access of people to an adequate level of care? And we gave, in the conclusion of that report, we looked at several proposals or steps that had been taken and made some rough comparison. To do that, I think you have to begin by looking for a definition of adequacy from a number of sources. One starting point is, what do physicians regard as basically beneficial proven treatment? You probably would not want to include in a definition of adequate care something that is not regarded as beneficial by the medical community, that is still highly experimental or regarded as a fad or unproven or a quack idea. But that wouldn’t be the end of things, because there may be some things which physicians regard as part of an adequate level that would be more than society would regard, and there may be some things that they would disregard. And we’ve heard a lot about the emphasis now on certain kinds of care that may emphasize more of nurses, like the use of a nurse midwife or something, and that many people may regard that as something that they would want to have; physicians may not be as high on that. But that could be part of it.
Another thing you would look to be, what with people with, say the average American middle-class person, if they were choosing health insurance vis-à-vis the other goods that they buy, not they heavily subsidized form of insurance that most people have now where our employers pay a large share of those health-care insurance costs in income that never gets taxed. So we were more likely to buy a very much richer health plan that covers a lot of stuff, that if we really had to compare it to education and housing and clothing and so forth, we might say, “Well, I in fact don’t regard all of that as quite as central as when I’m getting it at a very cheap price.” But if we could compare, what would people select as what they want if they were really buying their insurance with after-tax dollars? Also, it’s a matter of internal comparison. If you’ve got a disease that you’re treating now and that everyone agrees this is an appropriate treatment for, then we ought to make sure that that’s available. And someone says, “Well, what about this disease here and this treatment?” We would make a comparison. What’s the relative cost of the two? What’s the relative benefit, not just in terms of a physical benefit, but the many ways that health care provides benefits to us? It’s not just cure, because in many cases the simple fact of the matter is we have conditions that will cure themselves. But information and reassurance that physicians can provide is very important. And a lot of us in the middle class, when we go to see a doctor, that’s really what we’re getting. We’re being told, “Everything’s going to be all right. I’ll watch this. And come back in a week if things aren’t better.” And that’s a very important thing that health care can provide. So all of those things you would make a comparison. Each of these together helps you to define if one person says, “My plan covers this and this and this for this many million,” you can make a comparison and say, “Which does a better job of increasing access to what would be regarded as that adequate core of care?”
HEFFNER: You’ll forgive me if I feel still that the question of adequacy is based upon, has to be based upon some moral imperative. To repeat that, what’s adequate in terms of one sense of what we are owed as human beings…
CAPRON: Uh hum. Right.
HEFFNER: …that leads you to one set of policies. Different definitions take you to another. What is basic? What would make an adequate care?
CAPRON: Well, I don’t mean to seem not to answer the question again, and I think you think my answer isn’t responsive. But I think you have to evaluate it in the context of particular proposals. Some, many things are the sorts of things about which there would be very little disagreement. Take for instance prenatal care, care of pregnant women and their fetus, their baby-to-be. I think it would be widely agreed in society that that’s something that we think everybody should get.
HEFFNER: But Professor Capron, I don’t think that it is so totally true if we live at a time when there are great budget pressures and the federal government has to say there is just a limit on what we can spend…
CAPRON: I agree with you. I agree that that’s exactly the kinds of questions we face. And incidentally, the definition of adequacy is very relative. It’s relative to the time and the place.
HEFFNER: I would hope so.
CAPRON: And we’re trying to cast things in stone. There’s no way you can get away from this question of access to what though. And I happen to think our definition is a sensible one. People in the past have often tried to answer that question. And I think that they have actually succeeded in sinking the ship in the process. Because we can see that access cannot mean access to anything and everything, so we have to have a definition. But it would be exactly at the time when we are saying we don’t have all of the money in the world, the federal government has got to do some reining things in…
HEFFNER: Perhaps in the area of prenatal care.
CAPRON: Well, I would — I mean, this is my opinion, and it’s not something the commission was taking a stand on. You’re now in an area where I think we would need to apply the commission’s principles in a process, a democratic process, in which people would have a chance to work out their views, and that’s why Congress spends a good deal of time on these issues — but we would hope that they would take guidance and say that this is the relevant frame of reference for discussing it. My own view would be, it would be likely as part of that process that before we started talking about certain high-tech interventions for artificial hearts, that people would say, “Wait a second. Prenatal care, where you’re talking about the potential capabilities that a person will have through their whole lifetime, if they get good prenatal care and are both healthy, without the kinds of detriments that can occur because of poor nutrition or lack of medical attention before birth, that’s a whole life that’s going to be burdened. That’s something that we should put at the top of our list.” It’s also just simple fact in our society that we find it very hard to turn away from people who are very sick. So we have a choice between either spending the money prenatally, where we can help a lot of kids be born with a good, even start, or probably feeling that we can’t turn away from them, those babies who are very sick, where we have a lot of high-tech things we can do now in the nursery even with very tiny babies, and so we’re going to end up, if we don’t spend it prenatally, maybe spending more after birth in a kind of a heroic patch-up operation in which a lot of the babies aren’t going to make it, but some who are will have cost a great deal of money. And I think many people would think it would be much more, ethically as well as prudentially, responsible to spend that money. But I’m not saying you have to agree with me about prenatal care. I like the fact, however, I would like it if I felt that you were willing to say it’s a relevant question to ask, as between prenatal care and ten other things that might be on the table, which is more part of an adequate level? If that were the term of reference, I think then it can be an open discussion as to what individuals and the political process ends up saying is core.
HEFFNER: Then your commission basically set out the framework of what…
CAPRON: That’s right.
HEFFNER: …the ethical problems are.
CAPRON: And in that particular area, that was the response. Now, all of this goes back to your initial question about the report which was one of, I think, our most noted, came out toward the end of the commission, on decisions to forego treatment. And there too we recognize that there may be economic constraints, and that the individual, if competent, or the person speaking for them, the surrogate, if the individual is not competent, as a process of informed consent, don’t have any authority to say, “You must give me this or that treatment.” If the physician has entered into a physician/patient relationship, there is an obligation there to continue that unless the patient is discharged to the care of another physician. But it doesn’t mean that the patient can say, “I insist on this or that treatment,” where the patient isn’t paying for it. Now many patients, with insurance, of course, are able to pay for things. There’s a large number in this country that are uninsured. We estimated, given current estimates, that it would be 30-some thousand people. And at some time during the year, that’s probably larger now, the congressional budget office recently said there are about ten million people in the country who have lost health insurance because of unemployment in their family. So maybe it’s during the course of the present 12-month period it might be in excess of 40 million people. That’s a lot of people. As to those people, we’ve got to make sure that the efforts are made to, we think, to extend access to them toward an adequate level or care. But that doesn’t mean, you know, every form of extreme intervention.
HEFFNER: What may seem, of course, extreme to you may not, to me. Or the other way around. So that again it seems to me that the definition of terms here was so enormously important. For instance, you talk about informed consent. Was it the unanimous feeling of your commission that there is indeed something such as, something that can be called informed consent, that patients can usually, always, most of the time be in a situation when they could understand what it is they are being told and give their consent to?
CAPRON: Well, the commission was unanimous in its view on all its reports except one. So on the question of, was there unanimous view, the answer is, yes.
HEFFNER: I have to stop you. What was the one on which there wasn’t unanimous…
CAPRON: There was one dissent on this report on access to health care. One of the commissioners…Well, he didn’t object, this commissioner did not object to the notion of the ethical obligation to ensure access to an adequate level of care. It was some of the additional supporting data showing the present situation that he thought portrayed it in a way that insisted that there be a federal response. And that was not the commission’s view. The commission spoke of a societal obligation that can be discharged in many ways, and is discharged in many ways in our society, both through the private side and the state and local governments, through local hospitals and state health plans, and so forth. And also ultimately a federal obligation, because it’s not something that relates to being a citizen of New York City of a citizen of New York State, but rather a citizen of the United States.
HEFFNER: All right. Let’s go back to the question of informed consent. Is it simply a fetish? Is there really something such as informed consent?
CAPRON: I think so, very definitely. And I think that the commission’s study, which was involved, an empirical study there, the first on ever done, comparing the views of physicians and patients…
CAPRON: …or of the public. Not patients, as such, but people all of whom reported that they had at some time been a patient. Showed that the physicians’ attitudes have changed a great deal in this area and are much more amenable to the notion – and I don’t know whether this is medical education or a sense that the law has increased the requirements that physicians pay attention to their patients’ wishes – but whatever, there has been a change, if you compare our results with earlier ones, on the recognition that patients need and want this information. But if anything, the results of the interviews with the public showed a very, very high desire to have the information and to have the decision left with them. Now, I don’t think it’s an answer to that to say, “But many patients don’t understand things”. The commission’s view, because we also did observational studies, or we commissioned them, and we could see that often people, that there was miscommunication going on. Our view is the answer to that is let’s find better ways to make physicians and nurses and other health-care professionals good educators of their public, of their patients. And let’s start toward the assumption that we not only have an ethical imperative toward sharing that information and toward recognizing where the proper decision-making locus is, which is with the patient, but that if we start with that as an ethical assumption, if we make it operational, it’ll come true more often.
And we heard from people who have used different methods. For instance, one physician told us with his obstetrical patients how he talks to them and gives them information, and then he says to them, “I want you to go home and write out your consent form. I want you to write out what it is that you understand, you’re going to do with whatever procedures in question, and come back. And, you know, talk about it with your family, whatever, and put it in your own words. And when you come back, we’ll talk about it”. And then he has something which is not only very nice from any legal point of view, but much more important. He has an opportunity to see what the patient’s understood. And the patient is comfortable coming back and saying, “Well, you know, I got to this point, Doctor, and I realized I didn’t’ quite understand. Could we talk about it again?” Now that is the kind of luxury that you don’t have if you’re talking about an emergency appendectomy. So it’s not one solution fits all situations. But certainly there are a lot of ways that physicians can indicate to their patients that it is their life that’s involved, it is their health, and the decision is theirs. They better take an interest in understanding what the physician has said. They better be willing to ask the physician to repeat something, to say, “Give me something to read, Doctor, give me something to take home. I want to think about this. I want to become better informed”. Patients want that. We found that, as far as wanting information, that 94 percent of the people responded that even if we were talking about a dismal diagnosis, a cancer diagnosis or something, they would want to have that information.
HEFFNER: They would want to have it, but would they really hear when they get it?
CAPRON: Well, the studies that have been done, and ours is far from the only study of that question, indicate the first time it’s given, people often don’t hear much beyond the first information. It’s perfectly true. A shocking revelation, the person wants to know it, but then their ability to absorb the information falls off rapidly. But as I say, very few things are like an emergency appendectomy. It’s not a question just whether to tell; it’s a question of how to tell, how often to tell, etcetera. So its, with these things, if we think of…And I always find it helpful to think of myself in that situation. And I know that I would be as upset and, because I’m able to deal with something as anybody, but I have a sense that I wouldn’t want people saying from that, “Alex shouldn’t have anything more to do with this. It’s hopeless to inform him. He’s not going to understand it. It’s too complex. You have to spend four years in medical school to understand this”. We’re not talking about a min-course in biomedicine for the patient. We’re talking about relevant, germane, material information toward the choice that the person is going to be faced with making.
HEFFNER: It fascinates me though that at a time of increasing high-tech biology, medicine, etcetera, when I gather from my friends in the field of medicine, it’s harder and harder to be able to jam enough information into the medical school curriculum, that you and your commission were recognizing increasingly the need for consent, informed consent on the part of the public. It looks as thought those phenomena are at odds with each other…
HEFFNER: …the facts of the matter, and that nice willingness of yours to push for informed consent.
CAPRON: I think that there are two responses. One is, since we were addressing primarily an ethical imperative, we recognize that it may be an ideal, and that what we’re talking about is a process that ought to be an ongoing one. It’s not a single event. It’s not a piece of paper. And it may also not be terribly easy. It may be difficult, and not achieved in every case. But we would like to have it be an objective in every case. The second thing is exactly the point that you were mentioning about the crowded medical school curriculum. Many of the medical educators who are now involved, there’s for instance a committee at the American, Association of American Medical Colleges looking at this issue. Many of them believe that this is something that should be central to the medical curriculum, as opposed to just further technical cramming of information.
HEFFNER: Professor Capron, when I think of all the issues that were raised by your reports, and I know that you’ve got to come back and just begin to go over them with me. Thank you so much for joining me today on this first program.
And thanks too, to you in the audience. I hope that you, too, will join us here again on The Open Mind. Meanwhile, as an old friend used to say, “Good night, and good luck”.