Medical Care in America … The Politics of Survival, Part I

GUEST: Dr. Fred Plum
VTR: 1/11/1994

I’m Richard Heffner, your host on The Open Mind. And each year, because my wife is on the faculty at Cornell University Medical College, I learn first-hand about the impressive Women’s Health Symposium that the formidable, indefatigable Ellie Elliot, a governor of New York Hospital, conducts there. At the 1993 Women’s Health Symposium, “The Politics of Survival was the subject addressed by Dr. Fred Plum, neurologist and Chief of the Department of Neurology and Neuroscience at the New York Hospital Cornell Medical Center. And I’ve asked Dr. Plum to examine this all-important issue here on The Open Mind as well, for there are so many thoughtful persons today who claim that the politics of survival and Americans’ determination to prolong life, no matter what it costs to do so, have distorted the mission of American medicine. Indeed, I would begin our program today by asking Dr. Plum to react to lay critic Dan Callahan’s insistence that, quote, “Our medical system continues to encourage us to view death as a medical accident, the result of some mistake or research failure.

Dr. Plum, what is your reaction to that charge?

PLUM: I think it’s largely true. As a society, we have become unaccustomed, as it were, to reality. We’re surrounded by a culture which worships childhood rather than middle-aged wisdom.

HEFFNER: You mean like ours.

PLUM: Thank you.

In any event, we have forgotten the dignity of death. We’ve forgotten the dignity or the indignity of where we’re going to allocate our health resources. We have forgotten to keep the patient in the middle in terms of how long suffering should continue, and in just what measures may be available to relieve suffering rather than simply prolong a heartbeat. The expense of this is forgotten. We’ve grown into a community which believes that somehow, somewhere, someone else will pay, and that we can expect infinite duration irrespective of our identity as particular human beings.

HEFFNER: Do you feel we can’t, as a nation, afford to continue life just as long, meaningful life let’s say, just as long as possible?

PLUM: Well, “meaningful” is the important term. I think meaningful… Perhaps you should like to define what you mean by “meaningful.” But if you mean self-awareness without unreasonable degrees of pain and suffering which are immobilizing or catastrophic to the individual. I think we should do everything possible to prolong meaningful life, and we’ve already done it. When I looked at the statistics for 1950 for expectations of life for persons who reached the age of 50, it was somewhere in the neighborhood of, I think, 71 for males, and roughly 73 or 74 for women. All of that has changed in 40-odd years. Expectancy for men now is up at the age of 78 to 79. This is median expectancy at age 50. Expectancy for women is up to 82 or 8 years. We’ve added years to life through biomedical excellence. I think it would be a tragedy now if we simply assigned ourselves to years of existence rather than years of meaningful life.

HEFFNER: Well, you challenged me to offer a definition, but my definitions are meaningless. What’s your own? Because you deal with life and death all the time. You deal, particularly in your field, with those who are comatose. You have written on that extensively. You are an expert on that. What’s your own sense of what the right definition is of “meaningful existence?

PLUM: Well, I think that most people, if they think about it in advance, and not about their own parents, for example, would agree that human life is human self-recognition. It’s the knowledge of the existence of self and the self in relationship to the world in which it lives. It’s consciousness. Consciousness is not an alternative between coma and wakefulness. Once severe disease devastates a brain, all brains will wake up if the body survives. But a significant number of brains will no longer know that they are they, as it were, that the body i which they live is a singular body familiar to itself and familiar to other people. What we have sometimes called the vegetative state, using the word vegetative” to describe that part of the nervous system which runs the housekeeping details: breathing, pulse rate, digestion, the maintenance of body temperature, the maintenance of body water balance. Alt of that goes on without a trace of self-awareness in this chronic, devastated complication of, well say, loss of oxygen for more than five or six minutes, or very severe head injury, or rarely, other illnesses such as an attack of severe inflammation.

HEFFNER: But you know, my friend Dan Callahan emphasized, because sometimes Dan sounds more like an economist than an ethicist, emphasizes in his discussions of the incredible burden we bear as a society in terms of the costs of maintaining life and maintaining it and extending it and extending it. How much of that is a function of patients, people who are not conscious, who do not have that awareness of themselves and of life? I mean, are we talking about a very significant expenditure on our part now, when we are going beyond the limit that you would put?

PLUM: The calculated costs lie somewhere between 20 and $40 billion a year. And in that particular figure I’m including persons who, simply because of age, have lost all capacity to recognize. The very, very late stages of Alzheimer’s disease, where no self-recognition of knowledge of what’s going on in the environment exists, and yet persons may survive for two or three or four years in nursing homes. The Cruzan, Nancy Cruzan was the classic example in the young person of someone who was vegetative. She survived, if I’m not mistaken, for five years before the family successfully was able to bring the case to the Supreme Court of the United States, and the recognition that choice by the individual was sufficient to permit physicians, hospitals, what have you, to allow that remaining body to lose its last capacities.

HEFFNER: You say, “Choice by the individual.” I remember so well when my mother and I would walk down the street, and I was a mature man and she was an elderly lady, and she would point to people who seemed not capable of getting along themselves. And I remember so well she would say, “When I get like that, shoot me.” But I also know, as she aged considerably, and as she had less and less control of herself, she still fought to live. And I wonder, because I’ve seen that now a couple of times, whether there isn’t still that demand that we continue.

PLUM: Yes. But what you just said emphasizes the point. As long as I can fight to live, I am still here. Once that principle is surrendered to my body and doctors giving me antibiotics to cure this mindless living corpse, then that’s not what I want.

HEFFNER: So that your arguments relates only to those people

PLUM: Only to the issue of either fatal disease with overwhelming pain, in which patients will ask – ask – to be relieved. And I’m not talking about psychiatric depression; I’m talking about physical pain such as occasionally occurs in devastating cancers. Or circumstances in which, as I mentioned, either very late aging of Alzheimer’s disease or brain injury or lack of oxygen such as occurs following some cardiac arrests, leaves a body without a functioning, thinking brain. These bodies can go on for a very long time. Cruzan was five years. There are cases in the medical literature, indeed in the public literature, The New York Times for example, lasting as long as 40 years, of pathetically damaged persons as a child who were cared for by a loving mother for year in, year out, never a day missed. And yet the person in that body had departed from all reasonable considerations.

HEFFNER: There is that loving mother or loving father who cares for the child year in and year out. Where will, what will be the locus of power for making a contrary decision?

PLUM: We’ve made the court, the court has allowed the power to lie in the decision of the parents. For those persons in whom this condition has arisen at less than a mature age. Over a mature age, 18, I believe, in one or two states, 21 in others, the decision has had to come from a comment or an act or written statement by the individual herself or himself, Nancy Cruzan had a reconsideration in the State of Kansas because she had told a close friend that she wished not to survive were she ever as hopelessly damaged from the brain standpoint as another individual they had known. So that with this declaration of personal intent, the case was allowed to be reopened by the State Supreme Court, and eventually it went to the National Supreme Court for ultimate decision.

HEFFNER: There are comparatively few in terms of statistics of us who have made such a proclamation.

PLUM: Oh, I think that’s not so true. The Cruzan case and a number of others like it in which doctors refused to stop treatment in the presence of overwhelming and hopeless damage to the brain was the subject of a conference in Minnesota last year sponsored by the University and with representative examples given by families of what this had meant to them and an audience of over 600 people who’d volunteered, voluntarily elected to come and hear this discussion. When the question was raised on an open-hand question to the audience, “How many of you wish to be kept alive no matter what, as long as your bodily organs survive, and with a lost thinking brain?” I think something in the neighborhood of five hands were raised. When asked how many had actually signed declarations of intent, it was about two-thirds of the people in the room. Now, you might say that they wouldn’t be there…

HEFFNER: Self-selected. Right.

PLUM: …they wouldn’t be there if they hadn’t done that. In fact, the problem with most people is they don’t think about it. We have become so persuaded by various advertisements and ways of habit that we’re going to go along forever if we but use the right cold cream that no one thinks about the impact on the children or on society, or even on their own dignity of going on without a thinking brain.

HEFFNER: Well, you see, you say two things, if I may. You say no one thinks about that. That’s an exaggeration. You don’t mean that. Then you tell the story of the 600 self-selected people who came to that conference. I gather the statistics are such that they would indicate that we haven’t, by and large, in majority numbers, chosen living wills or any of the other kinds of documents that state in a legally sustainable way that we would not want survival at that cost. Is that fair? We just haven’t done it.

PLUM: We also haven’t, to be crude, we haven’t advertised it. You haven’t, in this wonderful program which you present and which is so widely reflective upon the thoughtful mind of America, you, meaning your own, you never asked people why they haven’t signed an advanced directive. The reason that most of them haven’t signed it is that they think it can’t happen.

HEFFNER: Now, let me ask you the question. Think it can’t happen. In fact, I drew up my own living will very, very late in life, just last year, after listening to Dan Callahan enough on this program and reading his books. So one thing was handled. And I was aware of the fact, Dr. Plum, of how careful I was to hedge everything I wrote with the thought of, “My God, who do I want to have make this decision? Whose prejudices and biases towards life and death do I want to involve in this? My wife’s? My son’s? I’m not so sure about any of those. My doctors? All of these people I have love for and respect for.” But isn’t it an incredibly difficult business to pick out someone who is going to make the decision about your own life and death?

PLUM: Prejudicial decisions are not applicable without evidence.

HEFFNER: Tell me what you mean.

PLUM: And the evidence is that one can tell who will get a brain back and who won’t get a brain back. One can tell at a reasonable point in the evolution of illness if there are clear signs by the end of the week following overwhelming brain injury, and to a degree depending upon age, that that particular person will never regain conscious awareness. By the end of the month the signs are such that of a hundred persons, only something in the neighborhood of 15 or 16 will recover any degree of awareness after a cardiac arrest or exposure to lack of oxygen for some other reason. This is irrespective of age. And out of the 100, only one or two will be able to be completely independent in the sense of independently choosing some task. Now, that’s a devastating probability.

HEFFNER: That means then that it is the neurologist, you and your colleagues, who are really going to call those shots. I’m not saying unfairly or inappropriately. But is that the case?

PLUM: Let me, if I may, put it the other way around. We neurologists have established facts which allow people to make decisions. In other words, it isn’t our goal or anywhere near our ethical responsibility to force decisions. On the other hand, we do have the data which even in children tells us when the picture is hopeless. And by “hopeless” I mean hopeless. And by “continuing to treat,” I mean costs on the society which may run as high, which will usually run as high as $125,000 to $150,000 a year per person. And when I think of the children who aren’t getting an education because of poor schools, when I think of the other burdens on the social contract, (find that an intolerable distribution of resources within the society.

HEFFNER: Let me ask this question in a, perhaps in a better way than I have before. When we deal with the question of consciousness, awareness of self…

PLUM: Yes.

HEFFNER: …are we dealing here at the end of life or not, indeed perhaps very early in life, are we dealing with a major portion of those decisions about life and death that you think, as a physician, not just as a neurologist, as a physician, should be made differently than we’re making them now, talking about pain, talking about the likelihood that one will not recover, recover from some totally debilitating disease? If you separate out your neurologically defined lack of consciousness from all the other areas and times that we continue life, when you would choose for yourself not to have life continued? Are we talking about ten percent, 20 percent, 40 percent, 80 percent or what now? Aren’t there, in other words, isn’t there an incredible area of choice still to be made if we subtract the number of people who are not conscious of themselves anymore? Don’t we still have one hell of a problem?

PLUM: Are you talking about costs? I’m not sure I understand your question. You’re talking about cost in health care?

HEFFNER: Cost in health care, cost in dignity, cost in what it means to be a human being. If we separate out all those cases which are neurologically appropriate for you to say, “This can’t be reversed, don’t we still have an incredibly large universe of decisions to be made about people who are simply going on in great pain because our society seems to value continuing life above all else, because we can’t grapple with death? How large a portion…

PLUM: I’m not sure I understand the origins of your question. Let me just, if I may, take it one by one.

I would apply the criteria to Karen Quinlan just as much as I would apply it to the vegetative person who had reached 83 years full of life and vitality and self-awareness and then had lost all of that. I would see no difference, particularly perhaps because Karen Quinland went somewhere between 12 and 14 years.

HEFFNER: But are we talking only about that phrase that you and a colleague developed, “vegetative state?” Are we talking only about people in a vegetative state?

PLUM: No. We come to a separate group of persons. And this becomes more delicate. But nevertheless, I think, still ultimately a problem in which medical information has to be critical. Namely, people who wish to die because of insufferable pain. And Kevorkian being the extreme pendular swing, which I think is too far. But nevertheless, persons with physical disease, wracked with irreparable pain, totally immobilized or invalidized by that experience, who say, “Please, let me out of here. And I think we have to honor that. I think, as a physician, why should the physicians only be concerned with the pain of bringing something into life? Why should they not also be concerned with providing comfort to those who think they’ve lived their days as they think they wanted to live them?

HEFFNER: Why do you say Kevorkian has probably gone too far?

PLUM: Because some of the cases who have requested suicide at a particular point were still within the properties of their good minds. There was no qualification placed on the act or the time of the act. And a combination, for example, of early difficulties with memory, coupled with psychological depression because of early difficulties in memory, and we’ll say for the average intellectual, isn’t enough, in my opinion, to justify doctor-assisted suicide. I think that under those circumstances there are other measures in which at least one can add meaningful life to that particular individual.

HEFFNER: So that your certainty about comatose states, vegetative states, becomes less so, the certainty is diminished as we get into different areas, particularly areas of people who say, ‘For my own reasons, my own sense of my own dignity, whether it has to do with my memory or my pain or whatever, I choose out, and I would like medical assistance.”

PLUM: This has been the pattern in the Netherlands. It’s very carefully watched. And their physicians, it’s a small country, and perhaps they have a more homogeneous culture among their medical scope. In that country the extremes of persons who are asking for suicide simply because of psychological depression has been vigorously resisted. And they know that although there’s never been a lawsuit in the Netherlands, they stand open to public exposure all the time in the carrying out of their ethical principles. I’m not saying that that would work in this country. But what I am saying is that psychological reasons, particularly in light of the wonderfully effective antidepressant drugs which are available at the present time, that because of psychological symptoms only one certainly couldn’t come out and countenance self-selected suicide. And it’s our job to do everything possible to prevent it.

HEFFNER: And not permit someone to make his or her own free choice.

PLUM: I have to honor free choice. On the other hand, I have to do everything within my power to persuade people who are psychologically unwell that there is a way out, that there is an alternative, and their alternative is overwhelmingly stacked with favor at the present time that they will be better a year from now.

HEFFNER: I have no free choice other than to say this program is over. But I’m able to say that if you’ll stay where you are, in a few minutes we’ll pick up again because there are so many other questions to ask you, Dr. Fred Plum. Will you?

PLUM: I delighted.

HEFFNER: Thank you.

And thanks too, to you in the audience. I hope you join us again next time. And if you’d like to share your thoughts about our program today, please write: The Open Mind, P0 Box 7977, FDR Station, New York, NY 10150. For transcripts, send $2 in check or money order.

Meanwhile, as an old friend used to say, ‘Good night, and good luck.’