Thursday, November 20, 2008

Session 4: Medical Futility

Remarks by Council Members Benjamin Carson, M.D., and Daniel Foster, M.D.

CHAIRMAN PELLEGRINO:   Thank you. Thank you all very much for coming on time from the break, un-breaking the break. First, to begin the last session this afternoon is one of our own Council members, Dr. Ben Carson. Ben, are you with us? Okay. Do you want to speak from there or do you want to speak from the podium?

DR. CARSON: I think I'll just speak from here.

CHAIRMAN PELLEGRINO: Okay.

DR. CARSON: Well, very interesting discussions today on futility, and obviously as a neurosurgeon, it's something that I have to deal with frequently. Just before I start just a couple of comments on some of the things that were heard today. The term "miracle" came up a number of times, and I know that there's certainly patients who are in very dire straights who are holding out for miracles, and I certainly have seen my share of them, but I tend to have one standard answer for them. I simply say, "Miracles come from God and not from people, and if He's going to do one, He doesn't need us to do it." And most people kind of understand that.

And the other issue is the case of Terri Schiavo. Now, I've seen a lot of people in various stages of persistent vegetative state, and if you go up to an individual like that and you apply a noxious stimulation, they can feel it. They can feel pain. And I think, you know, as we try to determine what attitude we're going to take toward them, we need to keep that in mind.

I personally feel that starving someone to death who can feel pain is cruel and unusual punishment because starving is not a comfortable sensation. And, you know, it never has really been much of a problem in the practices where I've been involved because people get urinary tract infections, they get pneumonia, they get various things that don't have to be treated, and it's a much more humane way of allowing someone to go than actively starving them to death.

Now, having said that, I had a case just this Monday of a family who brought to my clinic a four-year-old boy, a young mother and father and a grandmother, who had a malignant brain tumor, had been operated on elsewhere twice, and had been given a course of chemotherapy. The tumor progressed through all that.

The child was laying there on the exam table, wasn't moving any extremities even with noxious stimulation, gave no indication of interaction with the external world, although the parents assured me that he could hear and that he could respond. I called the oncologist who assured me that he couldn't and about all of things that had been done, which were very different than what the parents were saying.

The point being that a lot of times the advocates for these individuals hear and see what they want to hear and it may be something that's very different than reality. And, you know, part of, I think, what the practitioner, the good practitioner, has to do is to be able to ferret out fact from fiction and help the surrogates to understand that. And when they have a much better understanding of what's going on, then sometimes they can act, I think, in a more rational fashion.

What I, in fact, told that family is that because this child was paralyzed, was unable to move, that even if we could make all the tumor disappear, because that child had been in that state for several weeks, that the central nervous system would not work and therefore the child would remain in that type of state. Well, they hadn't heard that before and there was some weeping and wailing and gnashing of teeth, but I think they came to an understanding at that point.

And sometimes, you know, it's very difficult. You feel like the bad guy when you have to tell people what the facts are. But in many cases I've seen medical practitioners who don't want to be the bad guy, who don't want to actually give the facts, and that simply prolongs the emotional distress in the long run. It's probably better to go ahead and be honest with people.

There's another case of a 12-year-old that I think I've talked about here before who was in an automobile accident, severe multi-system trauma, including the central nervous system, and, you know, I told the mother in that case that if we pulled out all the stops, if we did everything known to man, that we could probably save this child, but that the result would not be a good one. She would never walk, she would never talk, she would have very, very little interaction with the world. And the mother said, "Yes, I'll take it."

That was nine years ago. I see them about once a year. And exactly what we predicted is what is there. The mother is delighted. I don't think that the patient is. And, you know, I have to wonder in situations like that are we correct as practitioners when we are willing to pull out all the stops?

Maybe the mistake is even making the offer to pull out all the stops in a situation like that because a lot of times people cannot act in a rational way when you're dealing with their loved one. This is something that I think needs further discussion in terms of doing what the patient wants done and ignoring our medical knowledge.

Just yesterday I was talking to a colleague who had a woman who had a herniated disk in the thoracic spine that had herniated anteriorally, so it was going to require a transthoracic approach. A preoperative chest x-ray demonstrated a spot on the lung. A subsequent CAT scan demonstrated that it was likely to be an aggressive tumor of the lung, a malignancy. The patient didn't want to hear about it.

She said, "Just do the operation. I don't want to hear about any cancer. My mother and father and several relatives have died of cancer. I just don't want to hear about it. Just take out the disk." Now, what should he have done, you know, in a situation like that? Still to be determined.

Obviously the case the canceled and further consultation done, but obviously him needing him to do a transthoracic approach in someone with a malignant brain tumor, that could have real serious implications for that patient's longevity.

Now, in thinking about what is futility, I think most of us would agree it's not futile if something has a 50 percent chance of succeeding, but what if it's a 10 percent chance or a 1 percent chance or one-tenth of 1 percent? And I guess what we're asking when we ask those kinds of questions is what is the value of a human live and how much are we willing to sacrifice in order to save it?

Now, it's easy for us to sit around and say, "Well, let's make it one in a hundred or let's make it one in fifty," but what does that really mean? You know, if we go back historically and we look at hydrocephalus, a condition that we're able to treat quite effectively these days, but go back 50 or 60 years and you're dealing with that one in a hundred situation. The same thing with myelomeningocele, spinal bifida. You know, what if we go back many years.

We don't have to go back that far for a disease like megaloblastoma, a malignancy seen primarily in children in the posterior part of the brain. Dismal results. What if we had said, you know, "They all die. Why should we bother to continue working on this. You know, only 1 in 100 of them survive." Well, now, there's an 80 percent, five-year survival for megaloblastoma because of a lot of hard work that's been put into it.

So this is not to say that it isn't important to look at the numbers, but I think it's also important to look at whether, in fact, there is increased understanding of what's going on and maybe to re-look at things periodically.

That was certainly the case with hemispherectomies, an operation we use to control intractable seizures in children. And when I was first approached about doing a hemispherectomy in 1985, you know, the operation had fallen out of favor because of the high complication rate.

But in looking at the reason that there were so many complications previously, you know, there had been a number of advances. So we started doing hemispherectomies again and, you know, everybody does them now because we started looking at a problem that had been sort of written off in light of new knowledge and new technology.

So I think that's something that we always have to keep in the equation, because as we advance as people in medicine and science, that's going to change. We have to be pragmatic when we look at these things. Obviously there's only so much money, so many people, so much in the way of resources to go around, so—but if we try to save everybody or if we try to save no one or if we come up with something in between, we're still going to be wrong sometimes, no matter which of those philosophies we decide to choose.

So I think we really do need to be looking at practical guidelines, but we also need to recognize that people should have the option of opting out in exceptional situations.

CHAIRMAN PELLEGRINO: Thank you very much, Ben. And now I'll ask Dr. Daniel Foster.

DR. FOSTER: I'm going to say two things here. You'll probably say I'm biased about the first one, but I want to begin by a defense of medical professionalism, which is sometimes called paternalism or dogmatism, and to do that I want to turn to the experience and testimony of the late Dr. Franz J. Ingelfinger, who was the distinguished editor of the New England Journal of Medicine, himself a physician/scientist who worked on esophageal carcinoma.

He gave the George W. Gay lecture at Harvard on May 5, 1977, which had to do with ethical issues. And at the time he had been diagnosed with the same cancer that he had studied—that is, an esophageal carcinoma. When he died, the lecture was found in his files and the other editors of the New England Journal decided it was worthy of publication and they published it on December 25, 1980, after his death.

And I want to cite several citations from Dr. Ingelfinger. When you're the editor of the New England Journal of Medicine, everybody in the world knows who you are and you will see what that says. He began his lecture with a general statement about the role of the physician and then turned to his own experience with his esophageal carcinoma.

He said, "If the physician is to be effective in alleviating the patient's complaints, it follows that the patient has to believe in the physician, that he, the patient, has confidence in his advice and reassurance. Intrinsic to such belief is a patient's conviction that his physician not only can be trusted, but also has some special knowledge that the patient does not possess. He needs, if the treatment is to succeed, a physician whom he invests with authoritative experience and competence. He needs a physician from whom he will accept some domination.

"I'll go further than that," Dr. Ingelfinger said. "A physician who merely spreads an array of vendibles in front of a patient and then says, `Go ahead and choose, it's your life,' is guilty of shirking his duty, if not malpractice.

"The physician, to be sure, should list the alternatives and describe their pros and cons, but then instead of asking the patient to make the choice, the physician should recommend a specific course of action. He must take the responsibility, not shift it onto the shoulders of the patient. The patient may then refuse the recommendation, which is perfectly acceptable, but the physician who would not use his training and experience to recommend the specific action to a patient or in some cases frankly to admit `I don't know,' does not warrant the tarnished but still distinguished title of doctor."

Then he turns to his own case, to testimony, to illustrate what he said in the generic statements. His esophageal carcinoma was growing. "The current medical practice is to assume that the patient who has an operation for any of a variety of cancers, including the type I have, should also be given prophylactic treatment in an effort to eradicate the micro-metastases, the tiny metastases, before they enlarge.

"For this purpose both chemotherapy and radiotherapy are being used extensively. So one question was, `Should I have chemotherapy with all its side effects, and if the chemotherapy, what kind?' Even more debatable was the question of whether I should have radiotherapy. Radiation would involve for me a number of complications, such as fibrosis of the lungs, scarring of the lungs, and the possibility of a host of less frequent, but nevertheless serious side effects.

"At that point I received from physician friends throughout the country a barrage of well-intentioned, but contradictory advice. The question of prophylactic radiotherapy was particularly moot. As a result not only I, but my wife, my son and daughter-in-law, both doctors, and other family members became increasingly confused and emotionally distraught.

"Finally when the pangs of indecision had become nearly intolerable, one wise physician friend said, `What you need is a doctor.' He was telling me to forget the information I already had and the information I was receiving from many corners and to seek instead a person who would dominate, who would tell me what to do, who would in a paternalistic manner assume responsibility for my care.

"When that excellent advice was followed, my family and I sensed immediate and immense relief. The incapacity of enervating worry was dispelled and I could return to my usual anxiety, such as deciding on the fate of manuscripts or giving lectures like this."

And then he—the title of this paper, I forget to tell you, was "Arrogance." And he's contrasting two arrogances. The arrogance of expertise and then the traditional form of arrogance, and this is how he finished.

"If arrogance in the sense of paternalism and dominance is an ingredient of beneficial medical care, these qualities have to be used appropriately. To the extent that paternalism and dominance are infected by some of the other meanings of arrogance, a physician's conduct with patients is correspondingly worsened. Thus if his paternalism is accentuated by insolence, vanity, arbitrariness, lack of empathy, the care he attempts to provide his patients is nullified."

In other words, a physician can be beneficially arrogant or he can be destructively arrogant. Now, I'm absolutely committed to and un-defensive about beneficent paternalism. I think everyone should want a true physician, which I defined in a lecture last week to the Texas Academy of Internal Medicine as follows: A true physician is one—the implication is that there are some physicians that are not true physicians. There have been pirates in the system from antiquity, but a true physician is one who is continuously and changingly competent, who throws self into the battle against disease and death without reserve, who fights equally to relieve symptoms when cure evades and who is characterized by a constant, unbiased, non-contingent kindness to everyone he serves under care.

John Stone, the poet and medical philosopher at Emory, just died. He was a wonderful, wonderful man. I have a book he dedicated to me. The first two sentences in his book In the Country of the Heart are these: "Every human is born with two hearts. One is the fist-sized pump that pumps blood and on the chest x-ray appears like a ghostly shadow, but each of us also has a metaphorical heart, which pumps nothing. It is the seat of compassion and kindness."

And every true physician has a metaphorical heart. And as a consequence, they wish to do the best for their patients in the ICU or wherever it is. And after more than 40 years I have a high view of the importance of the true physician's guidance to the patient under care.

Now, this is, as he said, does not mean that the patient has to follow the advice, nor is there any—there's a demand to talk with the families and the patients. It's hard these days when people come to emergency rooms and nobody knows them and you have a doctor who comes in and you have to make very quick decisions, but I think almost everything that I have heard hinted at in the futilities and so forth has to do with the fact that one of the big problems is the physician making medical decisions.

Now, any patient will know a lot more about her feelings than I do and maybe knows a lot more than I do in many things, but she does not know more than I do about medicine. And I will not back off. She does not know what I know about medicine. And I think it also is a failure to meet the demands of the physician if one does not do this.

It has nothing to do with trying to understand the patients, although I raised a question earlier, which I think is a very real one, that very sick people—and particularly if they have alterations in the way they think because of their disease—it's a little hard to understand what they say they want for them is truthful. That's the first thing.

And then much shorter I want to say just a word about futility decisions. I think our medical school in our public hospital may be different from—we have had almost no conflicting futility arguments—almost none. And I think that's because we've done pretty well about communicating with the patients, even though many of them are poor and desperately ill.

There's one of the statements that was made in the paper this morning about thousands of futility decisions made in Texas. I'd be very skeptical of bigger hospitals, very large, and they're serious with 49 or something like that. We have not—any maybe we just ignore it. I don't think so because a lot of the patients come in from the background that was— Dr. Rubin talked about. They're minorities and so forth.

So what I want to say about futility and about the policy is that I think we should be slow in activating futility decisions. You may—we shouldn't make those quickly. Let's say that a person with acute leukemia comes in and the prognosis is that she's got six month to live, but she's got acute pneumonia.

Well, we can immediately—we're not going to say that she's got a futile illness, she's going to die pretty quickly, everybody knows she's going to die. We treat the pneumonia so that she can have better months, better life for the time to go. So quick decisions should not be made.

Now, my most recent was with a patient that I've cared for for more than 20 years. She's had multiple complications of diabetes. She's one of the most wonderful women that I ever knew. She's an African-American member—person who worked in the laundry at Parkland Hospital, and I take care of her sister who is a registered nurse. But she's had all the multiple complications of diabetes, but she was so upbeat and everything.

Every time I'd see her, I'd say, " Ms. H., how are you?" She'd say, "I'm blessed." Well, Ms. H., you're now legally blind. You can't drive anymore." "I'm blessed." "Well, Ms. H., now you've got renal failure and we're going to have to put you on dialysis." "I'm blessed."

In fact, one day I came in. She said, "How are you, Dr. Foster?" And I said, "I'll tell you what, Ms. H., I'm really good today and you know why? Because I'm blessed to see you." Now, I was good for her.

You know, it's like Kierkegaard 's "like for like." I mean, I did—until the end of her life, I took care of her in the nursing home and—I mean, she lived at home with the home care and so forth. But what you give, you get. That's what Kierkegaard says, "What you give, you get." And she was so great to me.

Well, in the last year and a half I got called driving down the toll way one morning at 6:00 o'clock. She's had—in addition to these complications, she has had two upper GI hemorrhages, she's had three strokes, and two and a half months ago she came in to—she goes to the University Hospital because nobody in her family has insurance.

And she had endocarditis and it's with a methicillin resistant staph. I mean, that's a very resistant staphylococci. We treated her daily for two and a half months. And it was a really resistant bug to Vancomycin and everything else. And then about a week and a half ago she threw an embolus to her leg. It was a septic embolus, and she got gangrene in the leg. So it was turning black.

In any other circumstances we would have amputated. Then I talked to her daughter Kathy. Her daughter was just wonderful. And here's what she said to me about whether to operate. I thought she would die during the surgery, but here's what Kathy told me. She said, " Dr. Foster, my mother loves you, and she would want you to make the decision about this, a small chance that she would live if we—and I want you to make the decision, too, because of the trust which is there."

And I decided that she would not survive it, would die of it, and as a consequence it was futile. And she died quietly two days later. When I went there, her sister was there, the nurse, and so forth, and what they—you know, what they said to me, "Not that you're paternalistic or dominating, what you did was help us and we want to thank you." Wilma, the nurse, was crying and so forth, but—and that's when I told them about the "like for like," how Ms. H. had done probably as much or more for me than I had done for her.

Now, my point is that I have a high view of physicians. I think most of them are true and want to do things. They're not money-hungry people and all that. Osler said the same thing. I think it was September 17, 1902. He said, "I want to speak to certain features of your heart," and he talked about four things—the noble ancestry of true physicians, the remarkable solidarity to try to solve—to treat disease and make the knowledge available so other doctors could do it, to have a progressive mind set so when new things occurred that you would learn them. You have to be a life student. And then his last thing was they have—"True physicians," he said, "have a singular beneficence. The sum total of suffering relieved by physicians is such to make the angels sing."

So I just wanted to say a word about what I consider to be a noble profession, and I think it's a very lucky thing if you can have a doctor who cares for you and knows what in the world he or she is doing. That's what I said to the Texas Academy. I said, "What I've been trying—I've talked about true physicians." I said, "What I've been trying to say is that we ought to be the kind of doctors that when the time of reckoning comes for us or for our family that someone like you will take care of us."

CHAIRMAN PELLEGRINO: Thank you very much, Dan.

PROF. GEORGE: Well, Dan that was very, very beautiful and so much truth and wisdom in it that I'm tempted simply to sit back with the rest of our colleagues here and admire. But I do have a question. I don't think there's any doubt that in the poignant story you told in the treatment of your patient and your discussions with her daughter that the decision that you made and the decisions to which the daughter deferred saying that her mother would defer to your judgment was a medical decision. I don't think there would be any controversy about that.

You made the decision based on your best judgment, which was informed by your medical training and experience, that she would not survive the operation. So I don't think that—I don't think anyone around the room would consider that to be a controversial case, but consider that anything that you did or that they did was anything more than admirable. They deferred where they should have deferred, to greater expertise and knowledge.

And, of course, they were made much more comfortable in that by their long relationship with you, and wouldn't it be wonderful if we all had those kinds of relationships with doctors when, you know, the time comes, if it does come, when we're in those situations including, as the other story you told, felt even those of you who are doctors who also would need doctors.

But it seems to me that in the discussions that we've been having, not only at this meeting, but at some other recent meetings, the interesting and difficult questions come when we run into controversial areas about what constitutes a medical decision, where there are competing points of view, not only in society at large, but even within the medical profession about what constitutes genuinely a medical decision.

While it's clear that a decision about whether a patient is likely to survive a particular operation is a medical decision, it's not clear—or perhaps I should say it's clear that it's not a medical decision where someone is making a decision about whether a life in a particular set of conditions or a life living under a certain set of conditions, like in a persistent vegetative state or a minimally conscious state is a life worth living.

When we move into the question not of whether a particular treatment is likely to be useless in sustaining life, but rather into a question about whether the life that would be sustained is a burdensome life or a life worth living, then we're into the area that I think gives so many people—I'm one—so much trouble, so much worry.

Now, there might have been a time—I don't know—there might have been a time when a broader social consensus supporting a consensus within the medical profession itself around, perhaps, the norms of Hippocratic medicine, would have made it possible for us simply to defer to doctors when, according to the consensus, the decision being made really was a medical decision.

But it seems to me that social consensus, if it did exist, has broken down and certainly the consensus around Hippocratic medicine has broken down. So what I wonder about is whether the kind of deference that you would like to see or the kind of paternalism—and I don't use that pejoratively, as you didn't use it pejoratively—whether the kind of paternalism that perhaps once could have been practiced without controversy by doctors is any longer possible or desirable? And that's my question.

DR. FOSTER: Well, my own view is that these sorts of issues come up with—not the medical decision, per se. I mean, it usually comes when somebody has to be fed or somebody is totally unconscious. So I—I heard today that some people are talking about Alzheimer's or dementia being a futile thing.

I think that the majority of physicians would not do that. I mean, we treat patients with Alzheimer's disease just like we treat children with Down syndrome or even much worse things, like progeria and so forth where these kids are dying at three years old because they look like they're 90 years old when we do it.

So the fundamental issues have to do, I think, with these long-standing—that's why I said don't make quick decisions about futility. Now, I don't know what the calculus is. We heard something about maybe there are 30,000 people in this state. I don't know whether these figures are exact or what.

I would say that it might be that in rare circumstances that somebody could argue that there's a strong religious or other reason why somebody should be kept alive who has, as far as we know, no working neurons and so forth and so on, and one might make a judgment that a small movement from—with single patients for feeding and so forth is not worth the pain going through.

Now, for some physicians, this is a matter of conscience. That's what we're talking—you know, we've had all this argument about what about a physician who doesn't want to do abortions or things of that sort. And there are persons who genuinely—you know, true physicians who believe that that's not an acceptable life for somebody else.

So I can't answer your question. I don't think anything—most ethical or moral decisions are grey, not black and white. And so I would be the example of the—somebody trying to stay alive until a grandbaby was born. I mean, I'd be perfectly willing to extend a life under, you know, those short-terms things. It's not even an issue to me. It's the long-term things.

Where the courts are in general saying that—have generally said in these argumentative things that you could withhold things. So I see your point. What I don't see—I don't know, I'm trying to figure out sometime how many thousands of patients I've seen, a huge number, poor, in Parkland Hospital and so forth, and these decisions—these are newspaper decisions where—just like the little boy in Texas. Those things are where the real conflicts come.

The ordinary dying in an intensive care unit and so forth and so on doesn't involve this. In fact, as you say, I was taking care of the mother of one of our pediatric full professors, and we agreed that she had nothing to do, I discontinued the intubation, and I thought that—like most of the time we put them on oxygen—a T-bar with oxygen, I thought that she would die within a few hours.

And she kept living and living and living and living and living. And when it got to be about the eighth or ninth day, her daughter says, "You've got to do something." And I said, " Joann, I can't kill your mother. I can't kill your mother."

Well, fortunately, you know, on the tenth day she died, but you can't—you know, you can't predict all these things, and very often the family wants mercifully to let their mother or father go.

I'm not answering your question very well. I see your point, but I think it's these TV news and newspaper stories that generate, but day-to-day in big hospitals, these are minor in my opinion, at least from my experience. I don't know whether that answers your question or not.

PROF. GEORGE: Well, it's helpful and valuable, but I see this underlying problem going far beyond simply end-of-life issues, and it's not just because of the publicity surrounding some very high-profile, end-of-life issues.

Take the case of Down syndrome and abortion in the case of Down syndrome fetuses. We learned recently—at least the public was told that in 90 percent of cases where the unborn child is diagnosed with Down syndrome an abortion takes place.

Now, I don't know what goes on between doctors and the women that they're treating in those circumstances, but is and should the medical profession treat Down syndrome as—abortion in the case of Down syndrome— as a medically indicated abortion or not?

I mean, it seems to me there's no consensus on this. It's not something that can be resolved by scientific knowledge. One's expertise by virtue of one's medical training and experience is of no help, gives one no advantage over other people who are not physicians in understanding that.

But plainly there are some people who have the view that medicine, as such, has something to say about an issue like that. And that's just one example. We could talk about so many, some that came up when we had in front of us the representative of the ACOG Bioethics Committee that had issued their report on conscientious objection. It seems to be a problem across so many fields of medicine.

And as I mentioned earlier, and now I'll stop, it seems to me to reflect a larger breakdown in social consensus, the moral consensus of society, from which it's no surprise that the medical profession is not immune.

DR. FOSTER: Well, I don't think that's a medical problem. I can answer—I mean, there are a large number of people who are against abortion for any reason, even fatal and so forth. There are others who think that that's an appropriate thing to do with genetic pretesting and so forth.

In addition, from my medical standpoint is, that most kids with Down syndrome not only are happy and healthy for a good period of time, but oftentimes the most beloved—it's a problem sometimes that you love the Down syndrome more than you...

So to me I don't think—I'm just speaking personally. I'm not speaking for medicine; I'm not speaking—I'm not making decisions for women. And so if you just asked me personally, I think that was not—the next volume we're coming up is about testing in children, and one of the main views is, you know, should—the traditional view was whether you only test for diseases for which there is a treatment or for which there is a deadly outcome and so forth. Well, Down syndrome is not a deadly outcome.

Now, if I'm—I don't have religious feelings about this at all, but if I had—and I'm not speaking for my wife either, but I suspect that if we had a Down child coming along that we would be delighted to have that child. We'd be sad about the fact that he couldn't go to Princeton and have you teach him or something, but that's—that's the answer to your question.

I think that this goes over into other things where you want to—it becomes almost like our enhancement that we're going to do—what I would like to do, and I'll use anything in the genome that gives us information about a disease that's terrible and deadly, but we shouldn't try to make perfect babies here with things that might never happen.

And we talk about that with enhancement, you know, to make them smarter. I mean, somebody might argue to abort somebody that looks like—if we ever had a mark for intelligence and something, that you'd do that.

So I think there—but what I'm trying to emphasize here is that in ordinary, day-to-day medicine that's going to affect all of us here, these problems are not as great as they have—in my view have been raised to be.

So that's the only thing, because I'm like Ingelfinger. If I get sick, I'm going to get a doctor that I not only trust but knows something, and I don't want to get a doctor who I could trust and doesn't know something, and I don't want to get a doctor who—those two things are just—

CHAIRMAN PELLEGRINO: Thank you, Dan.

DR. FOSTER: Ben, I've been doing all the talking. It's your turn now.

DR. CARSON: Okay. No, you've done quite an adequate job.

CHAIRMAN PELLEGRINO: Dan, would you have anything you want to add? I have three asking to speak— Dr. Schneider, Dr. Elshtain, and Dr. Hurlbut, in that order.

DR. SCHNEIDER: I found these last two talks some of the most helpful that I've heard while I've been a member of this group because they give some sense of the nasty complexity of the way that people live and the way that doctors and patients deal with each other and because they are so useless in helping us find a rule that will solve all of these sorts of problems.

And I think that—I increasingly think that the search for rules that will give us a good handle on how these problems ought to be solved is a hopeless search. It is at least, I think, a search that has no longer any prospect of finding help from the standard categories of bioethics—the autonomy principles and the shared decision-making and the informed consent and all of these kinds of ideas—because they are simply too schematic to be helpful in thinking about how real people live their lives.

Let me give a few kinds of examples of that, starting with a story of my own experience with an endodontist. I went to him and I said, "So my dentist tells me I'm needing a root canal." And he looked at the tooth and he did the things he does and he said, "Well, now, here are the facts of your case." And I said, "That's very interesting. Do I need a root canal?" And he said, "That's your decision."

And I said, since I've been teaching this for 20 years, "Yes, I'm aware of that, but do I need a root canal?" And he said, "No, it really is your decision because your values might be different from my values. So what good would it do me to give you any advice?" "I have no values that are relevant to this question. And I've been teaching in this area, as I say, for a long time, and I don't want to develop values that are relevant to this question and I don't know how I would go about doing it."

People actually don't come equipped with a set of values even when they're 60 years old. They have very spotty values about some kinds of things and most of the time when they're making a decision, they're not making a decision by saying, "Here are my goals, here are my values, and this is the best way of achieving them."

They actually discover what their values are in the course of making the decision. And it is only really in the process of trying to explain to themselves what they have done that they find that they have some values that they now claim as their own.

The evidence is not only that people don't come equipped with values and they make their values up as they go along to explain the decisions that they have reached; there's a lot of evidence that people have a great deal of difficulty in figuring out something as simple as how they're going to feel in some imaginable future state.

People who have difficulty in anticipating how they're going to feel if they become paralyzed, for example, are quite notorious. They predict very inaccurately because they focus on only a small part of the life that they would be leading if they were paralyzed, and they don't think about the things they would still be able to enjoy doing, and they don't think about the things they would do to try to work as psychological defense mechanisms.

So people go to doctors, and the standard routine is that they have their values and the doctor gives them the information and they make the decision. In fact, I think doctors often have a lot of useful things to say about what your values ought to be.

I remember reading the description of one professor at Rice who had prostate cancer who went to a surgeon and said, "Now, surgeon, let me tell you what my values are. I have three priorities. Staying alive is the first one. Avoiding impotence is the second one. And avoiding incontinence is the third one. And that's the order in which my values are arranged."

And the surgeon said, "You're wrong about your values. You don't know what you're talking about, because you haven't thought very carefully about what it is like to be incontinent and how much of your life would be injured by that, including, probably, your sex life."

And the professor said, "I realize that I have been thinking very incompletely about this and that I didn't actually understand what I wanted or what my life would be like." There's a classic example of this where there's a fair amount of evidence.

People who are told that they need colostomies commonly—quite often say, "I would rather be dead than have a colostomy." And the evidence is that doctors understand better than the prospective patient what they are going to feel after they have had their colostomies. So doctors and people who have had colostomies have one set of ideas about what they're like, people who are presented with the possibility of getting them have another set of ideas.

So doctors have, if they are acute human beings, learned a lot by watching people go through the trajectory of illness and have helpful things to say or can have helpful things to say about what kinds of preferences you might want to have about illness.

Now, the trouble is, of course, that there are a lot of bad doctors, there are a lot of doctors that are bad in the arrogant way—in the bad arrogant way. Jake Haps just died. Jake Haps said very important things about things that were wrong with the way that doctors and patients dealt with each other. But the question is—are there any rules you can write that are really going to fix that problem? And I increasing think that the answer is that there are not rules that you can write, there are not principles you can invoke, and if there are, they're certainly not the ones that have become so standard in our discourse.

CHAIRMAN PELLEGRINO: Thank you very much, Carl. I have Prof. Elshtain, Hurlbut, and McHugh.

DR. ELSHTAIN: I actually have a quick question for Dr. Carson, then a slightly less quick comment for Dr. Foster. I won't take—and I won't take very long. Dr. Carson, in your very interesting presentation you mentioned the case of the 12-year-old girl who had been in the catastrophic automobile accident and you said, what, nine years on or something from that, that the mother was, in your language, delighted, but you weren't sure about the patient. And I wondered if you could elaborate briefly on what you took to be the source of the mother's delight and your concern about the patient.

And I'm going to go ahead and, Dr. Foster, it strikes me that the case that you described, your interaction with the patient over time, was quite the opposite of—and others have mentioned this—but of paternalism or domination in the way it's usually thought of.

And it strikes me we shouldn't want to resurrect or defend the language of paternalism or dominance, that there's another way to talk about what you described. We could talk about the legitimate authority of the physician based on his or her competence, which seems to me is rather different from talking about something like dominance.

And we could talk about the process of sort of healing and a relationship with a physician that has healing dimensions in it insofar as there's deep trust. And that also seems to me quite different again from some of the older notions of paternalism and dominance.

So I don't think that's what you were describing at all, actually, that the language of dominance comes from, you know, the Latin term for an absolute master— dominus. So one who engages only in monologues, to use Dr. Rubinstein, but never in dialogues, and what you described was a dialogic relationship very much all the way through.

So I think we do well to be wary of paternalism when we see it. Even as we—and I think there is that. I mean, I, myself, have encountered it. I think we'd also do well to appreciate the competence of the physician and why we are well-placed to have some confidence in that and in the authority that comes with that.

So I think we need a way of talking that doesn't try to resurrect some of these older notions. That was my only—

DR. FOSTER: Ben 's will be a much—and I was not defending dominance or paternalism, just that it was mentioned in almost every thought we heard today.

DR. ELSHTAIN: I know.

DR. FOSTER: So it's not as though it's disappeared. It's used as sort of a pejorative term. So I was only answering that in the sense of trying to answer this—

DR. ELSHTAIN: And what I'm suggesting following on from that is that we don't want to try to resurrect that language to get at what you're talking about because that strikes me that that's something very, very different and something extraordinarily valuable that you described.

CHAIRMAN PELLEGRINO: Dr. Hurlbut.

DR. ELSHTAIN: Wait, Dr. Carson has a question I asked.

CHAIRMAN PELLEGRINO: Oh, I'm sorry.

DR. CARSON: You know, the mother—obviously I can tell that she's happy because every time I see her she's got a big smile and she's full of thanks for the fact that we were able to keep her daughter alive. And that's understandable to a certain extent if you're looking at just the fact that a person is alive and hasn't left us.

As I frequently tell families after someone has died, "You know, the person who died isn't suffering. It's those who are left behind." And that's where the suffering comes in. You know, as far as the girl herself is concerned, she's worked out a means of communication with eye blinking, but to be a 21-year-old who has experienced the world that way—you know, I don't have any way of knowing for sure whether she's miserable, but, you know, I certainly think that I would be.

And sometimes I think that we as medical professionals can avoid such situations by not necessarily laying everything on the table. It's sort of a situation where, you know, we might want to give ECMO to too many patients. While a lot of those ECMO patients we could probably save, but to what end are we saving them? And I guess, you know, that's more of an ethical question than some of the other things we've been talking about today.

CHAIRMAN PELLEGRINO: Dr. Hurlbut.

DR. HURLBUT: I want to say how much I agree with your overall perspective on the importance of the physician as a trustable and decisive aid to the patient, assistant to the patient, but it strikes me, as was pointed out by speakers implicitly and one explicitly, that this dilemma is partly a product of modern biotechnology and it's just one of the edges, and there are many coming, offering us things that are not traditional uses of medicine and with strange extensions of medical purpose and so forth.

And so it strikes me that your affirmation will become increasingly important, not in any way less, as people know more and think more, and have more diversity of views. I think our whole purpose for taking on this project of professionalism in medicine is partly because we all intuitively realize that we're entering an era where doctors need to not just be good individual physicians to individual patients, but we have to reaffirm, reestablish, and clarify what medicine is and the role of medicine.

That's a larger kind of trust. And it comes back to what Jean was saying about there being—I can't remember the exact word. Was it truth warrants or something? Truth warrants. We need to not just lay this open to what was rightly decried as mere autonomy.

We need to have an input into this, because it's true that we aren't just pure insiders with our own—it's true that we are insiders to some extent with our own perspectives and our own medical culture and scientific culture, but we're privileged insiders in the sense that we're among the few people who actually get to see case after case after case.

And slowly, like so many things in life, as you see it, you begin to sift it and make sense of it. And so I think what has been decried as paternalism can be relabeled—what the term is I don't know exactly, but something positive.

Physicians have a practical, personal encounter with a very reality-grounded kind of experience on which to base their judgment, and so in that sense the physician that Dan laid out—the image of the physician was not—not only a physician with a breadth of personal experience, but one who places himself within a tradition of medicine.

And the common sense that was referred to quite a few times implicitly and some explicitly, especially in the first presentation—that common sense is not just the common sense of a one-moment in culture, but common in the sense that it crosses time and culture.

And I feel strongly that we need to address Robby's concerns. We need to start re-rooting ourselves in where medicine came from in the first place, what it is, what it means to be part of a profession that has been around for a long, long time and one that has over that time developed a coherent vision of what it is for.

And here's just a couple of things I think it's for, and then I'll stop here. We need to remember that you can take some lessons from nature. You can draw on what you feel intuitively through human experience, but also seek a coherent understanding of what nature itself tells us, namely that there are eminent powers in the body ordered toward health and healing, that suffering is a reality that we have to make coherent with our—not just our medical care, but our larger purpose and sense of life and the implicit limitations on the prerogative of human interventions. These are just three.

And maybe they're all summed up and I think crucially grounded and this is partially—part of an answer to Robby's concerns. If we would return to the core of our profession, we would return to the principles that are laid out in Dr. Schneiderman 's paper, and I quote these just to end.

"We started with the premise that physicians are obligated to offer only those treatments that have a reasonable chance of achieving a therapeutic goal"—I put the emphasis differently, but a therapeutic goal. And then he also went on to say, "We are a healing profession committed to helping and serving the sick."

And it's because of those things that I personally, at least, have clarity about some things I will not do as a physician. If we would root ourselves in reality and an understanding of nature and across time and culture, I think we'd understand our task better and serve our society better. We'd both provide both a better sense of purpose and a better sense of principles on which to operate.

CHAIRMAN PELLEGRINO: Thank you, Bill. Paul McHugh.

DR. MCHUGH: Well, I'm not sure I can add anything to this very wonderful conversation that started with Ben and Dan and Carl and others. I do want to perhaps choose a set of words of interest that a psychiatrist has for these matters.

Fundamentally a psychiatrist is very interested in how anyone develops moral agency, if I can use that word. How do we grow from being these little selfish bundles of flesh that come into this world into people who have moral concerns for others and think coherently about it, even when we disagree with one another?

And that's a subject of great interest to me as a psychiatrist because I'm interested in behavioral disorders. And if you're interested in disorders, then you're interested in what's normal. And normal is big when it comes to behavior.

And I think I'm speaking really to what Carl is saying, but I want to come back to what Robby was asking of Dan, because it was the issue of where do you guys get this moral posture that you use in the care and treatment of these patients? And my answer to it is we get it from our practice.

Medicine is a practice. It strives to deliver understanding of diseases and their treatments to human beings like each other. In that process of doing that, in practicing that, we begin with simple rules that are taught to us by our teachers, like Dan and the teachers that taught me, but gradually as we practice it more and more and have the experience of seeing the consequences—not simply the consequences physical, but the consequences psychological, the consequences social, the consequences and the like—we begin to develop a certain set of moral attitudes that have interesting features to them—that is, that they are—that they're not always completely in agreement with what's the standard views.

They're not always necessarily in complete agreement with each other, although we know we have coherent experiences together, but ultimately that we come to a place where we have a certain authority. Why wouldn't you think that moral truths wouldn't come to us out of these experiences?

We wouldn't say that they're the only moral truths, that they wouldn't be in conflict with other people in a pluralistic society, but where moral agency comes is from the practice of us all, what practices we choose, and if you want a normal person and bring up a normal person, one of the things is, "Gee, have a quest for something," and in that process of that quest, you will not only learn big moral issues, but, you know a lot of things will be—you'll decide them on the spot.

You won't have to think about them. It just becomes natural to you. You're not going to kill that person, you're not going to do these kinds of things. And medicine isn't the only practice. Our scientists learn the same thing working in their laboratories. They begin with physical things, but they ultimately come to talk about truth, the meaning of community, the meaning of laboratory issues, and ultimately the inspiration of other people to join them in this way.

So, I mean, that's a long way around to say my interest and the interest in relationship to our work today is how do people develop moral agency anyway, and they usually do it through practices and some of the practices are professions like medicine.

CHAIRMAN PELLEGRINO: Thank you very much. We will meet tomorrow at 9:00 a.m.