Representative SCHEUER. Well, thank you, for a most touching and deeply moving statement, Mr. Abram. We expected a superb statement from you, and we certainly received it.

BASIC HEALTH COVERAGE

In your remarks just 2 or 3 minutes ago, when you stated your credo, you talked about the health services that each of us should be able to look forward to, and then you said, with additional services to be available for those who want them and can afford them. Mr. ABRAM. Right.

Representative SCHEUER. What is the cutoff line?

Mr. ABRAM. I'm sorry. What is the what?

Representative SCHEUER. What is the dividing line between the services each of us are entitled to and the services that each of us may want but are only available to those of us who can afford them?

Mr. ABRAM. Well, Mr. Chairman, I suppose if-

Representative SCHEUER. And here you are obviously talking about health rationing.

Mr. ABRAM. Well, not really. I am saying that the basic package, the adequate care, the cost-effective care, should be provided on some kind of an overall coverage that is available to everyone.

Representative SCHEUER. How do you define "cost effective"?
Mr. ABRAM. Well, that-

Representative SCHEUER. Well, let me read to you a paragraph that will help us focus on the question of cost effective, because you have to consider cost effective, but compared to what? Compared to what other health needs and what other societal needs.

I am going to quote a paragraph from the guidelines on the teraination of life-sustaining treatment and the care of the dying, which is a report by the Hastings Center.

Mr. ABRAM. You have the author here. Ms. Wolf.

Representative SCHEUER. It's a brilliant piece of work, and I'm quoting from page 8 of the printed copy.

Justice demands that individuals have an oportunity to obtain the health care they need on an equitable basis. At the same time justice places ethical limits on the patient's liberty to demand rather than forego scarce medical resources. Justice tempers patient autonomy in those cases, where complying with the patient's directives would unfairly deprive others of equitable access to an adequate level of scarce medical resources. Considerations of justice or equity enter into decisions concerning these use of life-sustaining treatment-especially at an institutional or policy level-because those treatments can be extremely costly. Providing them can tie up scarce resources-such as beds in the intensive care unit-which must therefore be denied to others.

How do you define "cost effective"?

Mr. ABRAM. All right. Let me-it is a very difficult thing, and I am not a physician, but let me just give you an example of what I am trying to say. First of all, I don't think that the basic package should include carotid endarterectomy for asymptomatic patients. It hasn't been evaluated, and it may be actually dangerous. And I don't think the package should require it.

So I would say, first of all, with respect to new procedures that are costly and untested, I think the package should not include them unless they have been properly evaluated by some kind of a technical evaluation process, technical assessment, any more than

drugs should be used until they have passed through the FDA. We don't make these other requirements with respect to certain procedures and technology.

Now Mr. Chairman, let me give you a personal example. The other day I go in for a general examination by a wonderful internist, and he says to me, "You've got a heart murmur." Well, I'm 70 years old; I'm supposed to have a heart murmur, I should think. And I said, "What should I do that I shouldn't be doing?" He said, "Do whatever you want." I said, "What should I stop doing?" "Don't stop doing anything you want to," he said, "but come back in 2 weeks. I'd like to do an echogram." And then he says to me, "What's that thing on your ear, that brown spot?" I said, "I don't know." he says, "Do you have a dermatologist?" I said, "Yes." He says, "Has he seen it?" I said, "He looks at me all the time." He says, "Go back."

So at the end of a week, I was getting tied up in courts and other obligations, and I kind—I said, "Listen," called him up. I said, “I don't care what this costs." I said, "I'm not going to pay for it.' The echogram. But "What are you going to do or not going to do as a result of that echogram?" He says, "Nothing." I said, "Well, then, I'm not going to have it." He said, "Okay.”

That ought not to be in the package under those circumstances, but if I want to pay for it, let me pay for it. And the inhibition will be the paying and the time spent.

Now similarly, the thing on my ear, I go see the dermatologist. He looks at it and he says, "I've seen it for years." He says, "It's an angioma, burst blood vessel." But he said, "But oh, if this doctor says"-he starts getting out his knives; he's going to do a biopsy. I said, "Now wait a minute. You tell me that you think it is an angioma, and you are about to do a little surgical procedure." I said, "Wouldn't the blood come out if you stuck the needle in?" He said, "Yes." I said, "Well, do it." He stuck the needle in, and the thing was gone.

Now you see, what I am saying is that these-the system is built so that we demand everything. If we are going to have a national system, we can't demand it, and every headache cannot be examined by NMR or CAT scan. If somebody wants the NMR or the CAT scan, let them pay for it and let them pay dearly. That's all I

mean.

Representative SCHEUER. The tough question comes, and what is the difference between everything and anything? Where is that line? What are we entitled to? And then what is in that whole other arena, that everything arena that each of us can't demand? How do we draw that line in the dust?

Mr. ABRAM. I think it very difficult, and I wouldn't sit here to try to give you a generalized set of principles, certainly not in the presence of the author of the guidelines and Dr. Lynn, who is a specialist in this field.

Representative SCHEUER. Well Dr. Lynn and Ms. Susan Wolf will be testifying in the next panel. We will have a chance to ask questions of them then.

Mr. ABRAM. And I will listen with great interest.

REASONS FOR LACK OF MEDICAL PROCEDURES

Representative SCHEUER. Mr. Abram, you say we shouldn't permit people to demand procedures whose appropriateness and effectiveness have not been tested and validated. Why do you think we have been so lax in doing careful studies and analysis of the appropriateness and effectiveness of so many of these procedures that have come under such critical scrutiny by you and Joe Califano and a whole host of other critics of the system.

Mr. ABRAM. Mr. Chairman, we have lived in, first a very rich society, and second, we have lived in an age of terrific explosion of medical technology and great hope. So having very few limits, after all, we are now at 11 percent of our gross national product, and I suppose that is not the ultimate limit, but we have not felt that it was inhibiting housing, education, and defense even. So I think there has been the proclivity to spend if it would yield any result. And the second thing is that there has been no national control over expenditures whatsoever even for those whose benefits are paid for by outside authorities. And when there is no control, there is a desire to use every development that hits the market, and there are people who, of course, advance the cause of the new-fangled idea. They've got an investment in it, and there is a trained cadre of people who would like to try it, and then, of course, I think malpractice has an effect. Obviously, it would if I were a doctor.

Representative SCHEUER. Well, before we exercise control as a society on these things and say that if you can afford it, you can have it, but if you can't afford it, you can't have it, wouldn't we have to define its effectiveness, and wouldn't we have to define the circumstances under which it could be effective and the circumstances under which its effectiveness in enhancing patient outcomes would be very dubious?

Mr. ABRAM. Well, I had a discussion-

Representative SCHEUER. Before we control it, don't we have to know more about it?

Mr. ABRAM. Yes.

Representative SCHEUER. And my question to you is why haven't we engaged in this effort more intensively?

Mr. ABRAM. Well, I think in certain instances, we have assumed certain things are effective, and we know they are effective from long experience. For example, we don't need any further tests on digitalis. We don't need any further tests on quinine. We don't need any further tests on certain aspects of aspirin. I gather we need some tests with respect to the cardiovascular effects. But I think we do sometimes test those things-we need not test those things which are so obviously beneficial, but new, expensive technology, such as NMR and the use of carotid endarterectomies and the use of certain operations, particularly prostate operations-I noticed in some studies that were recently done, that in one Maine community, the number of prostatectomies declined by one-fourth, when there was a regional publication that showed that the bad effects of the operation were much greater than the doctors themselves knew.

I do feel that there is a great need to test an awful lot of procedures that are being done. I am not competent to say exactly what they are, but I do know that from all the evidence that the National Commission has and the President's Commission, there ought to be some better system of assessment.

Representative SCHEUER. And then after we make the assess

ment

Mr. ABRAM. Yes.

ALLOCATING RESOURCES

Representative SCHEUER [continuing]. Where do we go from there, as a society, in saying that this very expensive life-extending technology that can extend the life of a person who is in their eighties or nineties and may be suffering from various levels of dementia; this very expensive technology that could prolong that life or defer the process of dying; how do we evaluate providing that very high-cost technology against other competing unmet needs in the health care system for people at the very beginning of their lives, with their whole lives ahead of them and, as you said, other competing needs of society outside of health care-education, job training, enhancement of our science and technology, more National Science Foundation postdoctoral fellowships? How do we do that balancing act?

Mr. ABRAM. Your question is very well-posed, and I would say that to begin with, you do it by controlling third-party payments, and you establish standards for what third-party payments will pay. Until you do that, Mr. Chairman, it is now, as it should be, I might add, in the hands of the doctor and the patient. A patient able to make a rational choice says that I want this done to them. The doctor has the obligation to do it now, as long as the patient is able to exercise autonomy. When the patient is not able to exercise autonomy, then the proper surrogate operates for the patient with the aid of the physician, and they make a decision on the basis of the exchange of information with such third-party consultationpriest, rabbi, or preacher, as they wish, or any other family member. But we are now in the hands of those who can pay of absolute exercise of autonomy. And the ethical way it is done is on the basis of a full exchange of knowledge and the patient's choice. I am saying, and this may be offensive to some, I am saying that at some point, at least in respect of those who have third-party dependents, some of these things that are technically assessed properly or that are simply absurd, have got to be stopped.

Dr. Lynn is perhaps as well informed and deeply conscientious on these principles as anybody that could possibly testify, and I think you really should address this in detail with her.

Representative SCHEUER. Well, Mr. Abrams, you have given us very thoughtful, very moving, and touching testimony, and we have gone way beyond our allotted time for your testimony.

Mr. ABRAM. I know we have. I must apologize for that sir. Representative SCHEUER. No, no. You have nothing to apologize for. If you hadn't been thoughtful and stimulating and provocative, this part of the hearing would have been terminated quite a few minutes ago. We want to thank you very much for your testimony.

Mr. ABRAM. Thank you, Mr. Chairman.

Representative SCHEUER. Thank you for your testimony.
Mr. ABRAM. Thank you for the privilege.

OVERVIEW OF MAJOR ISSUES

Representative SCHEUER. OK. Now we will hear from the first panel on an overview of the major ethical issues. Ms. Susan Wolf, associate for law at the Hastings Center and the author of the report from which I just read a brief quote, and a very brilliant job. Ms. Wolf is a director at the Hastings Center of the project that developed the set of guidelines on the termination of life-sustaining treatment and the care of the dying. Mr. Giles Scofield, staff counsel for Concern for Dying; Ms. Ann Neale, vice president, Bon Secours Health System; and Dr. Joanne Lynn, acting director, Center for Aging Studies and Services, George Washington University. Again, I want to thank Dr. Lynn for her prodigious efforts in helping us structure and organize this hearing. We are looking forward to this panel very much. Why don't each of you take 7 or 8 minutes, chat with us informally, and be free to comment on any aspect of the hearing this morning, either Mr. Abram's remarks or anything you may have heard from the Chair, and give us your informal thoughts and widsom on this incredibly perplexing and soulchallenging set of issues, and then I am sure after the four of you have had a chance to brief us, we will have some questions for you. We will start off with Ms. Wolf.

STATEMENT OF SUSAN M. WOLF, ASSOCIATE FOR LAW,

HASTINGS CENTER

Ms. WOLF. Congressman Scheuer, I am delighted to be here today to talk about a problem of tremendous significance: the substantial obstacles that unfortunately still block good and ethical clinical decisionmaking in medicine. The very fact that we are still talking and worrying about this is remarkable. It is remarkable because I think 10 or 15 years ago, people thought these problems would be solved by now. We would recognize that patients have a basic legal and moral right to say "yea" or "nay" about invasive medical treatment. We would agree that when the patient no longer has decisionmaking capacity, somebody else-a surrogate-can take over decisionmaking for them. And we would put in place some kind of statutory recognition of what are commonly called "living wills," ways that people can say while they are still competent what kind of treatment they do and do not want when they lose capacity.

Unfortunately, these problems, these obstacles to ethical decisionmaking have not gone away. In some ways, they seem more intractable and more difficult then ever. I want to talk about why. I want to talk about what it is that seems to be blocking the substantial efforts we are making, both on the ethics front and the legal front, to put in place good decisionmaking practices. And to do that, I want to focus on one set of treatment decisions in particular, decisions about life-sustaining treatment. I am talking about cardiopulmonary resuscitation for the patient who is having a cardiac or respiratory arrest, the ventilator, dialysis, the full gamut of interventions that keep people alive.