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Thursday, November 20, 2008


Session 1: Medical Futility

Lawrence J. Schneiderman, M.D. Professor Emeritus, Department of Family and Preventive Medicine, University of California, San Diego

 

CHAIRMAN PELLEGRINO: Good morning. We're accustomed to starting on time. Thank you to all of the Council members who are seated and ready to go.

Welcome to the Thirty-Fifth Meeting of the President's Council. My first act always has to be to make this an official governmental gathering by acknowledging the presence to my left of the Executive Director of the Council, Dr. Daniel Davis . Thank you for giving us legitimacy, Dan, and we will now proceed with the meeting itself.

I want to thank you, the whole Council, for responding to our need to accelerate the Newborn Screening White Paper, and it will be distributed in an electronic format to the President and the Secretary of HHS and a key list of recipients on Monday, November 24th. It will then be printed and distributed in the usual fashion.

This is just a summarization of where we are on the reports. As you know, we have quite a few waiting to see the light of day in the outside world. The white paper on the Determination of Death will soon follow with the same sort of distribution process that you heard for the previous report: Initially, in electronic format, and then in the usual printed format.

Also on Monday, the 24th, you will receive another draft of a white paper on Healthcare and the Common Good for your review and comments. I hope you will respond as you have in the past as promptly as possible because the time is an issue.

The next item will be the final revised draft of the Organ Transplantation report which is also virtually complete. We moved it from the head of the line to the back of the line in order to get the Newborn Screening finished and the reviewing process for the Healthcare White Paper underway.

So we have several things going at the same time in what the architects call "fast tracking," several things going parallel with each other is difficult, but hopefully not too much.

Today's meeting concerns three topics as you know, I am sure: medical futility, conscience, and the past and future of public bioethics. We're going to begin with medical futility. And as the Council members know, we do not indulge in long introductions, and, particularly in this case, we don't need one.

Dr. Schneiderman has been working in the field we're talking about for a considerable time and I would say is the preeminent scholar in this field, and he is going to be talking about the question of futility that seems at times perhaps to be too confined in the narrow clinical situation but has, I think, increasing public implications and even policy implications. For those of you who may have read about the case of the little boy and the question of intervening outside of the constellation of decision-makers, physicians and family and so on, and this is happening with frequency.

Dr. Schneiderman, would you be good enough to give us your best?

DR. SCHNEIDERMAN: Thank you. First of all, thank you very much for inviting me. This is a very distinguished assemblage that I'm pleased to be part of.

What I would like to do with the first slide — and do I just say "next slide please"? Okay — Medical Futility: Where Do We Stand? What I would like to do is go step-by-step. Where do we stand in terms of the current status of the debate? Then I will point to some of the criticisms of it: where do you stand? And then I will be discussing where we have gone in terms of establishing in the medical setting with hospital policies, and finally I'll end up with what we call the standard of care, how do we achieve that if, indeed, we can.

The topic is broad. It's a classical concept, medical futility, going back as you'll see to Hippocrates . What it really focuses on is, not only our obligations as physicians and therefore as all health care professionals to our patients, what are our obligations, but what, if any, are the limits to our obligations? Then also, what is the relationship of the profession of medicine to society? Those two are the biggest elements that come under scrutiny when we're talking about medical futility.

So the next slide please. Here is an image of where we are constantly assaulted by the notion that all medical futility is, is how can we get rid of lame horses? Can you see that? Oh, I'm afraid not. That's a horse hospital. That's Gary Larson . And it shows doctors walking up and down with shotguns killing horses. And this, I submit, is the image that the opponents of medical futility have tried to promote, that all we're doing is trying to get rid of patients we don't like or we're trying to take over and assert what they always called unilateral policies, that it's the lame horses that we're going to do away with. So what I have to do is overcome that kind of image with, I hope, some rational discussion.

So the next slide. What is the status of the futility debate? Some time ago there was an editorial in the New England Journal of Medicine called "The Rise and the Fall of Medical Futility." And somebody had sat down in front of a computer and showed that, if you key-word "medical futility" over a period of about a decade, the number of citations rose and then they fell, and the conclusion was, therefore, it's no longer with us.

I and others pointed out in letters to the editor that they were looking in the wrong place, that it's hospital policies which now are the major location of considerations of medical futility as I will show you.

Everyone agrees that the problems that are raised by medical futility constitute the major cause for ethics consultations. This has been published, and it's also our experience, and wherever I go this is what people say where there is a conflict over, "Why are we doing this?" And it can be the nurses saying, "This is awful." The doctors saying, "Why do we have to do this when it makes no sense?" To the patients, "Why are they doing that?" and the families, too. So it is the major cause of requests for ethics consultations.

I think that we have to acknowledge that physiologic futility and benefit-base futility are still contested. I'll explain that.

The Society for Critical Care Medicine, although I think it's beginning to soften on this, has taken the stand that the only time you can call something "futile" is if it's physiologically impossible to do. In other words, if a patient seems exsanguinated, then you can't do cardiac resuscitation; if the patient is beheaded — I'm using their terms, by the way — then the patient is obviously dead.

This has been promoted as a value-free definition, whereas benefit-base is the one that I will try to persuade you to accept. We think that patients are what we're supposed to be taking care of in medicine and that physiologic futility focusing on organs and physiology is confusing effects with benefits, benefits being that which the patient has the capacity to say this feels good or is good or makes me more healthy. And for philosophers, it's confusing means with ends. So you will see as part of this talk I will try to explicate this.

Most of the hospitals that I deal with — I go around the country discussing this with hospitals — most of them are benefit-based. It has to do with the patient, whether the patient is benefiting from this treatment. How do we set up a hospital policy where we can say, "If we can't benefit the patient, we shouldn't be obligated to do it and, therefore, we should be thinking of something else like comfort care."

Now the next slide. Believe me, this is a slide that I had in my presentation back in 2005. I am not trying to pander to Dr. Pellegrino . But I really like his statement, and I'm going to read it. "Those who call for the abandonment of the concept have no substitute to offer. They persist in making decisions with, more or less, covert definitions. The common sense notion that a time does come for all of us when death or disability exceeds our medical powers cannot be denied. This means that some operative way of making a decision where ‘enough is enough' is necessary. It is a mark of our mortality that we shall die. For each of us some determination of futility by any other name will become a reality.”

Now what this brings to mind also is another famous Italian, who said, " Eppur si muove ." That's what this reminds me of. When Galileo was hauled before the Catholic hierarchy to recant his heliocentric notion of the universe, he was told, "We know that the Earth stays still and that it's the sun and all the other planets that rotate around the Earth." Galileo, facing what we would have probably been a pretty horrible punishment said, "Okay. I agree." And then legend has it that he said, "Eppur si muove." Still, it moves. In other words, it doesn't matter what we say here. And what I really like about this quote is that it has that same quality. It doesn't matter how much you obfuscate it. You had to acknowledge it exists. Okay?

Now the next thing is the problem with the definition. Is it a definable concept? Now the Oxford English Dictionary — and those of you who are English majors in the audience know that that's where we go for our authorities, just like in medicine we go to Goodman and Gilman — is: "Leaky, vain, failing of the desired end through intrinsic defect." It comes from the word futilis, which was a vessel used in ancient ceremonies, which was wide at the top and narrow at the bottom. You filled it up and it tipped over. You filled it up and it tipped over. It's impossible to keep it filled. Now this was a religious ceremony.

What is striking about this is that this is what has happened in medicine. We keep trying to flog patients with the same treatment over and over again because we're going through some sort of need to express reverence, love, affection. It's like a religious ceremony. And this is what we do for families. "Oh, you've got to do it again. You've got to try it again." Whereas, we can do such a better job if we can persuade them it's not by flogging patients with efforts of cardiopulmonary resuscitation but better ways to manage pain and giving them a better end of life rather than just simply the same old thing over and over again.

Next. Futility can be divided into two components, a quantitative as well as a qualitative. Now this is work by the way that I started with Al Jonsen and Nancy Jecker, both of whom are philosophers at the University of Washington . And if you go to the Hippocratic corpus, you have these kinds of statements. "Whenever the illness is too strong for the available remedies, the physician surely must not even expect that it can be overcome by medicine." "To attempt futile treatment is to display an ignorance that is allied to madness." Now, a quote attributed to Einstein this time, "If you keep doing the same thing over and over and over again and expect a different result, that's a definition of insanity." And that's why there is a kind of parallel to what the Hippocratic corpus says.

By the way, I neglected to mention that when the Catholic church insisted upon the Earth being the center of the universe and Galileo had found it not so, I consider that a very early example of socially constructed reality. Those of us who are now surrounded by postmodernism and absence of meaning or "meaning can be determined by any culture or belief," I think that was a good example of it. And Galileo — as we in medicine constantly run against what we call "brute facts" — that no matter what you call it, this is what happens.

Okay. Then I see here you're missing qualitative. It's not in the printed printout. This comes from Plato 's Republic, and it's "For those whose lives were always in a state of inner sickness. Asclepius, who as you know was a demigod, did not attempt to prescribe a regiment to make their life a prolonged misery. A life of preoccupation and illness and neglect of work isn't worth living." That last point, I will bring into contemporary circumstances. A life where you can't do anything but the life that you have, we have to ask ourselves, is that a sufficient life as part of a medical goal? Is that what medicine is supposed to provide us?

Now having said that, the next thing — and that's pretty much the status of futility in brief. I have really curtailed a lot of stuff that I would ordinarily say. But for this group, I'm trying to compress it.

The next is, what is your position of the futility debate? Oh, dear. We're missing some of the slides in the paper.

DR. HURLBUT: They're there.

DR. SCHNEIDERMAN: Are they? Then maybe I'm missing them.

DR. HURLBUT: They're on the back.

DR. SCHNEIDERMAN: Oh, clever, saving paper. I apologize. Where I come from, we only do one-sided. Okay.

What are the goals of medical treatment? Several. In the Hippocratic tradition, this is important because medicine derives today from the Hippocratic tradition, and it was really limited to restore health and alleviate suffering. The point being that the Hippocratic physician shunned the notion that he — and they were all men — had supernatural powers. That's what charlatans claim.

It wasn't until the Middle Ages and then later with the scientific revolution and the Enlightenment that people thought that, no, we can overcome nature. It wasn't just simply assisting nature that, in the case of the Middle Ages where religion played a stronger role with medicine, miracles were looked for. The so-called "sanctity of life" was begun as a notion that what doctors in conjunction with religious healers should achieve. And, of course, we all know about the Biblical miracles. This began in the Middle Ages. And the idea that — with Francis Bacon particularly being the one most associated with this — that we're now making such incredible discoveries, we may be able to overcome nature and prolong life.

Now the point I want to make is that they used the word "life," and they had a concept of life which is very different from what we can do today. Neither the late-Middle Aged theologians or the 17th Century scientists could imagine the various states of life that we're able to sustain today. I look around the room and, like me, some of you lived before the term "persistent vegetative state" was coined. This was in 1972, very recent really, in medical history.

When I was a house officer and, of course, that was in the last century, so you have to discount some of what I say, we didn't keep people alive who we could. It was very easy, a feeding tube and good nursing care. We knew that wasn't what was expected of doctors, to keep people who are permanently unconscious. That was not part of what we imagined ourselves to do. Now that's what people are doing, and we have an estimated maybe 30,000 to 40,000 patients in persistent or now permanent form of unconsciousness being maintained throughout the country.

Then that has to bring up the question, are there states of prolonged life worse than death? And I just have to point out that certainly quite a few people in Oregon think so. Even though 90 percent of the people who seek physician aid in dying are registered in hospice, they nevertheless seek to end their lives because they think that death is to be preferred to the state of life that they're in. So there is that quality that we have to mention that maybe life is not the be-all and end-all, at least from the medical perspective. Some of you, of course, will disagree.

Now moving on with quantitative futility, one of the problems as every medical student hears is: "We can never say never." Okay? That's the problem of uncertainty. So can we agree that, if we try something over and over and over again, at some point we say "This won't work." Now this goes back to David Hume and it goes to Karl Popper, both of whom were philosophers of science who said that causality is something that we conclude from our observations but can never predict. In other words, if you try A and can't get B, try A again and can't get B, and you do it over and over and over again, you cannot be absolutely certain that the next time you try A you won't get B. In other words, you can't write laws for the future. All you can do is make some kind of reasonable conclusion.

And this refers to — people get confused about that quantitative notion — we said in our paper, and I don't know if you read any of the papers that I put in there. But we said, you have to pick a number. You can't just say, "Oh, zero survivors," because you have to have some mathematical way to calculate. Can we say within a certain degree of probability that there are no survivors, and this is what we use to do statistical tests for. And we've adopted one, the 1 in 100 rule, because that's the classic one that's used for P value of .01. This is statistics. It's reasonable. By the way, in a court of law, a jury can sentence a convicted felon to death if he's a murderer, say, not when they are persuaded beyond all doubt, but beyond a reasonable doubt. We recognize this is a term of art in our human experience. You cannot be absolutely certain.

Now those of you who recall Linda Emanuel — I read she said this is not very helpful to her. So if you will notice at the bottom of that slide, it just so happens within the last month a very important paper was published giving the outlines of when the indications and guidelines for attempting CPR in the outpatient setting. And they say the "basic life support" rule had a positive predictor value for predicting lack of survival which is"within the acceptable range used by medical ethicists for defining futility." I'll bet you can guess who those ethicists were who were defining futility. They were referring to our original paper.

So in other words, the early American Heart Association guidelines said things like, "Oh, you've got to resuscitate unless the patient is dead or there are zero survivors." Well, again, we, again pointed out in the paper, you can't say zero without telling me. How many times are you going to try before you conclude there are zero survivors?

Okay, so next: Quantitative, Or Else. Now I'm quoting here a paper by Rubenfeld and Crawford. These are researchers at the University of Washington that has a superb bone marrow transplant program, which has a large experience. And one day these two very fine young men decided they would go over their past experience with bone marrow transplantation. And since Crawford, in particular, was a pulmonary specialist, they wanted to find out of all those patients they put on a ventilator, what was the outcome? And to their horror, they discovered that they found that 398 patients who had, what we call, "multi-organ failure," had been put on a ventilator. Zero survived.

And I find it rather plaintive, their conclusion, which I have here which I'll read." It is difficult to specify limits beyond which treatment should be withheld when there is any chance that a life can be saved. However, if we cannot agree that treating 400 patients with prolonged intensive care without producing a single survivor is beyond such a limit, then it is unlikely we can reach a consensus about limiting care in any clinical situation."

I have to point out that, although I applaud these folks for looking back — and by the way, they now use this as a caution and don't put people on a ventilator under these circumstances — but if they had looked sooner, after 100 patients, they would have spared nearly 300 patients what is a very burdensome tortuous procedure which is futile. In other words, the patients didn't survive after rib-breaking, heart-shocking, tube placement in patients who were dying in the ICU. That's pretty rough stuff, and they did it to 300 patients. Had they stopped it at 100, they would have spared them that kind of torture.

Okay, qualitative. Next, I just want to touch on the qualitative. The goal of medicine in my opinion and the opinion now of many others is not really to provide an effect but a benefit which can be appreciated by the patient. Therefore, we think a treatment is futile if the patient remains in a permanent vegetative state. There is biological survival without conscious autonomy. The patient cannot feel anything, express anything, do anything with the life that's been given him or her. Or, in our original proposal, we said if the patient can't survive outside of the ICU that person is "preoccupied," according to Platonic concept, with his illness and the treatment, therefore, if that's the best you can do, that treatment is futile. Since then, because many of the outcome studies have to do with hospital discharge, we've expanded that simply. So it's not only the ICU but the acute-care hospital.

Our job as physicians is to give the patient enough — and that may be minimal — but to give enough help so they can go out in the world and interact and do something with that degree of health that they have. Short of that, we are not doing our job. We are simply keeping a body alive using technology that was intended for other purposes.

Okay, so now we get to: What is your position on the futility debate? And I'm going to pose a series of questions and my response. But you will have an opportunity, I'm going to assume, to respond to those.

Isn't futility a value-laden term and shouldn't only a value-free or strict physiologic definition be used? I've already given you my thoughts on that, but here we go. Physiologic futility is not value-free but a value choice, which departs dramatically from the patient-centered goals of medicine. That's one thing. And by the way, physiologic futility, even though it's supposed to be value-free has been contested. And the New York State Task Force's version of it was challenged by those people in critical care medicine.

But more important, I think, for what the consequence of that idea — and this is because medicine has been so dominated by subspecialists in the basic sciences — they lost their way. They lost the sense of the whole. And what this has resulted in is that delayed medicine's appreciation of the importance of good end-of-life care.

We are just now getting around in the last few years to requiring doctors to know about pain medicine. Palliative care or palliative services that are just beginning to appear. This is shocking that medicine has gone on this long and neglected something this important. We all die, and we all die — remember, 80 percent of Americans die in a health care setting, 60 percent in an acute care hospital.

How patients die, not whether they die, but how they die depends on a lot of what doctors do. And to my mind, it's shocking that we are just learning to come to this as a result of getting away from that notion of physiologic measurements. We are not experimental physiologists. We are physicians.

Okay. Doesn't a patient have a right to obtain any desired treatment? This is a claim that antagonizes and opposes the notion that physicians can, and they use the word "unilaterally," although as I will explain we go through great efforts to achieve a consensus. But I had a patient once, a very well-developed and muscular young woman who came to me and said she wanted to be a world-class body builder and she asked me to prescribe anabolic steroids. Well, I'm licensed to provide anabolic steroids. Anabolic steroids can certainly bulk up her muscles, but I couldn't prescribe it. I didn't prescribe it. It's illegal, which is society's way of saying, "No." But I just wanted to dismiss this notion. She has her personal goals which were not compatible with medical goals. This is what we have to keep in mind. Sometimes patients want something that is not something that medicine should be obligated to provide, and that is the source of the disagreements very often in futility.

Next. How can the physician be absolutely certain a treatment won't work and produce a miracle? As I've already indicated, we can never be absolutely certain, only reasonably certain. And again I use that term of art from the law. Is the physician obligated to seek a miracle? What I'm always saying is in the old days when patients wanted a miracle they went to church and prayed to God. Now they go into the hospital and demand it of the doctor, though we can't provide miracles. In my books and writings, I cite instances in the Bible where they clearly say physicians are not empowered to produce miracles. And so we have to get away from that notion.

What if the patient or more usually the family insist on doing everything even if there is only 1 in 100 chance of it working? As I always point out when somebody says to me, "Oh, you should do it even if it has 1 in 100 or 1 in 1,000," remember the denominator. What you're saying is this might work after you've done it 100 times. But 99 times it's going to fail. And we're talking about failure at the end of life when patients in the ICU are getting attempted CPR or getting ventilator treatments or being really manhandled and woman-handled in a very aggressive way. This is harsh stuff. This violates the notion of proportionality. So remember the denominator if you really are going to literally make that argument.

Okay. And then — Isn't it true that no standard of care has been achieved with regard to medical futility? I'm going to, I think, respond to that and it's clear, hospital policies and statutes are developing a majority and respectable minority standard of care. Just to kind of give some forecast to what I'm going to say, I think we can deal with a conflict which is going to be interminable by making this kind of accommodation, and I'll go into more details.

Okay. A few exceptions and cautions. People say, "Well, if I'm not going to do the treatment, do I have to even talk to the patient about it?" And then there have been critics who say, "See, they want to deny the treatment and they won't even tell the patient they're not going to do the treatment." I think it's context dependent. When I was taking care of patients who had a headache and it was an obvious tension headache, I didn't tell them, "Oh, you know what? I'm not going to look for a brain tumor. I'm not going to do a CAT scan. I'm not going to call the neurosurgeon," because in that setting, the context didn't require it.

Anyone in the ICU though, anyone who has watched television, knows that one of the possible treatments is attempted CPR. I keep using the word "attempted," I hope you will notice. Our term is not DNR. It's DNAR. Do Not Attempt Resuscitation. It's called truth in advertising. In other words, it doesn't work very often despite what you see on television.

In any event, anyone in the ICU — and it's our rule that if you are going to say we will not attempt it, we will write a DNAR order on this patient for the following reason, and we will discuss it or have discussed it with the family usually, but that's obligatory. You do have to discuss it and explain it.

The other thing is people think that just because you declare a treatment futile that we're going to be really nasty and rough about it and just pull the plug. That doesn't happen. I mean, we make what's called a reasonable accommodation. This, too, is a term of art from the law. The first time I read of it was when the Long Island Jewish Hospital had a patient, an Orthodox Jewish family, their daughter was dead by whole-brain criteria. The Orthodox Jewish family didn't accept that. They insisted that — and notice I'm not going to say "life support," which is what The New York Times said — the patient was dead, remember — but "organ support." They maintained organ support for two weeks saying, "We'll try to accommodate this family." After that period of time, they said, "This doesn't make sense. This is a dead body. This is not a patient. We're not obligated to continue this," went to court, and were in fact permitted to withdraw the organ support from this patient.

The decision said that the hospital had made a "reasonable accommodation." We call it also a "compassionate exception." If I have a patient that I'm rounding on and the patient is a woman with metastatic cancer, she's bedfast, we know empirically that if she has a cardiac arrest she has no realistic chance of survival and a hospital discharge, and she says, "My son is in Iraq . They've notified him. He's flying home. Can you keep me alive or, if I have a cardiac arrest, could you try to keep me alive until he comes home," the answer is yes. Even though we know it's futile, we will do what we call the "compassionate exception."

Now Sue Rubin refers to Imbus and Zawacki, who looked at patients who had severe third-degree burns. This is a very fine paper where these burn specialists offered to patients a chance to continue treatment or not, aggressive treatment, knowing that their chance of survival was nil. They gave them that option. Some patients said, "Yes, keep me alive as long as possible," even though they died anyway. Others said, "No, I accept your decision and I would like comfort care."

This is a compassionate exception. This is what we do in medicine. This is different from what Terri Schiavo's parents asked for. This is something that lasts a few days, at most a few weeks. The difference is that we should not as physicians be obligated to continue the life of someone who is permanently unconscious, gets no perceived benefit for years. And that's where we draw the line.

Okay, Further Implications: Once a treatment is shown to be futile, it should no longer be offered except as an experimental trial requiring human subject approval and patient informed consent. I usually use this on the oncologists. The oncologists are always attempting CPR. And on one of my rounds in the cancer center, every single patient there with metastatic cancer was full code. And they think, "I have to do attempted CPR." The evidence is that it will not benefit the patient in terms of getting them out of the hospital. So my recommendation now is, "If you oncologists think that your patient is different or your technique is better or there's some reason why you think attempting CPR on this patient is going to result in a different outcome than all the others, that's an experiment. Use your experimental informed consent, not treatment informed consent. You should submit this protocol to the IRB." In other words, what we're doing is trying to improve medicine rather than just flog the same thing over and over again that doesn't work.

And — "Patients do not have a right to unproven treatments on the grounds that their disease is serious and no treatment of proven benefit is available." During the heyday of AIDS activists, this was the argument used. "Oh, these people are going to die. They deserve anything they want." And some of the stuff they got was more toxic than the disease itself.

Let me point out something that's not appreciated, I don't think. "Big Pharma," by their own calculations, point out that for every 5,000 new chemicals that are synthesized, 250 make it to animal trials, 5 make it to human trials, 1 gets ultimate approval by the FDA. At every step, the majority are rejected because either they are useless or harmful. So this notion that before we really go through the Phase III and go to clinical trials that a treatment is "promising" or likely to benefit is wrong. It's more likely not to benefit and even to harm.

Okay. Now we move on to the hospital policy, and here is the UCSD Medical Center policy. This was put together by a committee, as you can see by how verbose it is, and it's one that is now being a model that we're working on for the San Diego community.

If you don't mind, I'll read it, the definition of futility, "Futile treatment: Any treatment without a realistic chance of providing an effect that the patient would ever have the capacity to appreciate as a benefit, such as merely preserving the physiologic functions of a permanently unconsciousness patient or has no realistic chance of achieving the medical goal of returning the patient to a level of health that permits survival outside the acute care setting of UCSD Medical Center." We could only speak for ourselves. Okay, that's the definition. Now we quickly go on, and it's, "In the event of disagreement among the parties involved in the treatment of a patient, futility will not be invoked before the completion of an appropriate dispute resolution process."

Now I want to say a couple of things about dispute resolution. There are some people who make the argument that there is no such thing as futility. Everything will be resolved by a dispute resolution, kindness, by listening to the patient, intensive communication. Actually, I have to credit Thaddeus Pope in his presentation the last time. He admitted that it doesn't always work. Also, I was asked as a consultant by an outside hospital to deal with a very intractable situation where the wife absolutely refused to allow her permanently unconscious husband to be given a peaceful sendoff. She became so terrifying to the nurses that some of them quit. She threatened the hospital with all sorts of mayhem in the news. And they hired a professional mediator who accomplished nothing.

The thing that you have to understand about mediation or dispute resolution is it comes from the fields of the law and business where compromise is the most sensible thing to do. If you and I disagree about a contract where we're both after the same million dollars, we may decide, "All right then. Let's split the difference and not pay the lawyers." That's the kind of compromise that you get in the business and law area. It's not that way in medicine. People are either dead or they're not. And so you'll get intractable, insoluble situations even after all your best efforts.

Now, there is also the question of the hidden agendas. Some of you know the Helga Wanglie case. This is a woman who lived in Minnesota who was permanently unconscious. It was one of the first to become public. It wasn't quite a futility situation, but the health care workers there had two patients who were permanently unconscious. One was on welfare, and the other one was Helga Wanglie who had private health insurance. They didn't want to get into a dispute with the courts about the welfare patient because they didn't want that to be tainting their whole consideration. It turns out that the family which insisted that doctors shouldn't play God and had very high lofty moral explanations for the behavior — in fact, their pension depended on how long Helga Wanglie would live. They insisted that the patient be in the hospital because if she went to a nursing home then she would only be eligible for Medicaid after they spent down their assets. There are so many other factors that go in that are non-medical that tainted the views in some of the landmark cases.

I should point out that — oh, by the way, this case that I just described is published in the Hastings Report. And I asked Nancy Dubler, who is sort of the world expert on mediation — she's written a book on it, she's one of the advocates of it. I said to the editor, "Look. We'll write our position on this and get Nancy Dubler to write hers." By the way, you can only make peace with your enemies, and so I'm always looking for people who disagree with me, as you'll see today. This is where we try to deal with that issue.

Now following right away after our definition of futility is this next step, which is "comfort care" — "Care whose intent is to relieve suffering and provide for the patient's comfort and dignity. It may include analgesics, narcotics, tranquilizers, local nursing measures, and other treatments including psychological and spiritual counseling. It should be emphasized that although a particular treatment may be futile, palliative or comfort care is never futile."

Whenever I hear anybody use the term "futile" care, I know they haven't thought deeply about this. "Care" is a word that we treasure for our patients. We never say there is no care possible, that this is futile care. Each treatment is evaluated on its own terms whether it benefits a patient. Care is never futile.

Okay. The next step is — What is the standard of care regarding medical futility? And here is a quote by George Annas that I like almost as much as Dr. Pellegrino's. "Physicians must...not only set standards for medical practice, but also follow them. Physicians cannot expect parents, trial-court judges, insurance companies, or government regulators to take practice standards more seriously than they do themselves."

You've got this after the Baby K case. The Baby K case, as some of you know, is a baby born with anencephaly. That's where the brain is completely gone at birth except for the brainstem. So although the baby has all of the so-called vegetative functions — the heartbeat, respiration, digestion — and can survive, there is absolutely no awareness there in any other respect. A person can't hear, understand, see, and that person will never grow up to be what we have associated with a living person. This Baby K case, though, was one of the serious cases that we had to confront in medicine. The hospital asked the court for permission to withdraw life-sustaining treatment, and they were denied that as I'll explain. But this is a mistake that hospitals make. They go to the courts for permission. Massachusetts General Hospital didn't make this. One of the best cases to actually define the limits of medicine. It was the Carol Gilgunn case where after months and months of efforts to accommodate the daughter's wishes to keep her mother alive, it went to a jury trial. The daughter said, "My mother would have wanted to be kept alive." The jury said, "Yep, she's probably right. She's speaking of what her mother probably said." On the other hand, the jury said, "Doctors shouldn't be keeping people like this alive indefinitely." So this is what I call one of the instances where the public is speaking, and it's clear that they understand this.

Okay. There are a few ways to go at this standard of care which are legislative. I'll just briefly go by them. You know about the Texas Advance Directives Act, and that Thaddeus Pope gave it to you. I'm just emphasizing that it is 48 hours notice and, if there is no resolution in 10 days, that the family has a chance to seek another hospital and, if they decide then to withdraw futile treatment, then they have legal immunity. This Texas Advance Directives Act has been attacked as discriminating against minorities and this is wrong, and people have been using claims and statements that have been unverified.

The next slide should be by Larry McCullough . He really got angry. I don't know if you know Larry McCullough. He's an outstanding ethicist, one of the old-timers. And he's a very sober man. But he really got exercised by the way medical ethicists, including others, had distorted what was going on. And he says here, "Any claim about racial or ethnic characteristics of patients brought for review under the Texas Advance Directives Act lacks a foundation in fact. Colleagues should be aware that some statements by family members, including statements to committees of the Texas Legislature and to the press, lack foundation in fact. That bioethicists add their own groundless and potentially explosive speculation to the public debate is irresponsible on its face and constitutes a disgrace to our field." I've never heard him get that exercised.

Okay. Here's another way that I personally have tried to see what we can do about establishing a standard of care. Back in 1998, I called together a bunch of hospitals up and down California and members of ethics committees. And you can see what I was hoping is that we would look at the hospital policies of a variety of hospitals who actually had tried to address this issue of medical futility, give them some cases, and see how those cases would be resolved with their policies.

Now I did another thing, which again I'll tell you, I asked Alex Capron who is a professor of law at USC to co-chair the conference with me. He is an outspoken opponent of medical futility. I just wanted to make sure that we were, in the much maligned phrase, fair and balanced.

Here's a summary. We had 74 participants — that's all that could fit in the room — 53 ethics committee members; 29 hospital ethicists. You can see that we had physicians, we had attorneys, we had judges, and we had laypersons and members of the clergy and nurses. This was a room about this big where we all would try to deal with this issue.

Now here's what we came up with. All but 2 of 26 hospitals had specific futility policies that define nonobligatory treatment. By the way, these are in hospitals that were doing it independently. We didn't have a consortium. We didn't have many, many, many meetings. This is what I brought together, and let's see where we are. All but 2 of 24 hospitals defined nonobligatory treatment in terms of benefit to the patient rather than physiology, some with specific examples, dependence on ICU. So they were obviously influenced by our paper. But I want to make it clear, that's why I am confident that the majority standard is benefit-based and not physiologically-based. This provides a basis for definitional standard that justifies a futility decision, and for a respectable minority.

So the next slide. Here is where I think we should go with medical futility, considering the fact that not everyone will agree with the majority standard.

Oh, by the way, I was very disappointed at that meeting because we didn't all agree. And I said, "How can we have a standard of care if everyone doesn't agree?" Alex Capron, it was he who said, "You know what? You don't need everyone to agree. You have clearly a majority standard. And in the law, if more than one person follows a procedure, that can be a respectable minority."

So here's what I'm saying. The majority standard: Medical futility refers to treatments that offer no realistic quantitative or qualitative benefits to the patient. If this is your standard, document it in your institutional policy and provide procedures for dispute resolution, declare this policy as your professional standard of care for the information of the public and as a guideline to the courts.

Now if you are a minority, then this imposes certain unexpected requirements on you, I think. If you have an alternative definition or no documented limit on treatment, declare this policy as your professional standard of care for the information of the public and as a guideline to the courts — and here's where you say what you really believe — accept transferred patients and avoid court disputes. In other words, if you really say, we believe in keeping these people alive, then you have to say, if you are rejecting this patient, we will take him.

We already have different kinds of hospitals. We have some hospitals that do abortions and some that don't. We have some hospitals that do bloodless surgery and some that don't for Jehovah 's Witnesses. So this is not a big deal. This is an acknowledgement that there are different values. I accept that. We made our case. We think the majority of hospitals are following this and an increasing number are. But those who don't should see their responsibility of either — is this your position, or are you just talking?

Okay. Finally, not quite finally, I just want to make this point, which I've already made. What is the standard of care? Ask permission of the court to discontinue life sustaining treatment? — this is important — No. Withdraw life-sustaining treatment according to hospital policy and defend [the action]? Yes.

Let me point out that at UCSD — and, in fact, I learned just before coming here in all University of California hospitals — there has never been a single court case where we have invoked our futility policy and lost or had any difficulty with it. You go through the steps, and the courts support the physician. And I see it happen over and over again. Doctors are very paranoid. There is only one doctor who has ever been put in prison for deliberately killing a patient and you all know who that is — Dr. Kevorkian . And he had to go through at least a half a dozen jury trials before anyone would convict him. And he finally had to do it on TV before they got him. The public really understands that there are things that doctors shouldn't be doing and want to support that.

Now, finally, okay. I started thinking: Those of us who recognize the importance of the limits of our obligations to continue aggressive life-sustaining treatment are very much involved in how do we make good palliative medicine, bringing in family, long discussions. In other words, one of the things that Dr. Truog in his article says in the Gonzales case that he thinks that folks like that, that their wishes should be honored and tolerated. He didn't say "obeyed," and I think that what we do in our hospices and by lengthy dispute resolution and by many meetings of ethics committees for patients who refuse to accept the inevitable, we are doing that to honor their wishes. It's just at the end, we don't obey them. And Bob Truog and I might agree you go very far, but you don't necessarily obey.

Okay — A Good Death Then. I don't know how many of you know Willa Cather 's book, Death Comes for the Archbishop . But she describes this ideal scene that was before our high technology. This was death in the 19th Century. "In those days, death had a solemn..." well, actually, do you need me to read that? Why don't you read it because it's such a lovely passage? And then when you're done, I'll read the next one because it's short.

[Insert passage from slid]

A Good Death Then


“In those days…death had a solemn social importance. It was not regarded as a moment when certain bodily organs ceased to function, but as a dramatic climax, a moment when the soul made its entrance into the next world, passing in full consciousness through a lowly door to an unimaginable scene. Among the watchers there was always the hope that the dying man might reveal something of what he alone could see…the dying murmurs of every common man and woman were listened for and treasured by their neighbours and kinsfolk…and pondered by those who must one day go the same road.”

From: Death Comes to the Archbishop, Willa Cather (1927)

[End of insert]

What we are doing in medicine is seeking to balance the electrolytes in a dying patient, preventing what almost certainly happens which is metabolic acidosis and dehydration. These probably account for some of the euphoria in the dying patient. In other words, we, in our modern technology, have made it hard for nature to do a good job of giving patients a good death.

Now here's what happened. This was a little article in The New York Times that I picked up. I'm trying to say, what is a good example of a good death now? And it happened to be Washoe, the chimp. And Washoe, the chimp, apparently was a very remarkable chimp who learned lots of words. And here's the description:"'The chimp died in bed at age 42, surrounded by staff members and other primates who had been close to her,' Dr. Jensvold said." And I thought, goodness, if we can do that for a chimp, why can't we do that for people?

And the final slide, and this is the final slide. Remember, I told you about the Baby K case, the anencephalic. The New York Times reported this in this particular headline, "Court Order to Treat Baby Prompts a Debate on Ethics." What concerns me is the subhead, "At what point does treatment cease to be worth the expense?" Notice how it's the cost, nothing else that seems to matter, that this has become the issue — should we be paying money for this? This concerns me because the main impression that's been looked at is, if we pay them, they will do it. That gets us close to being a version of the oldest profession. If you pay me, I'll do anything you want.

Now it just so happens I've had patients who were members of the oldest profession and they assured me there are some things they wouldn't do no matter how much they were paid. And I think it's important that the medical profession achieve such high standards, too. Thank you.

[Applause]

CHAIRMAN PELLEGRINO: Thank you very much, Dr. Schneiderman . I've asked Dr. William Hurlbut, a member of the Council, to open the Council discussion. Bill ?

DR. HURLBUT: Thank you very much. Both in the readings and in your presentation I felt an echo of what meant so much to me in my medical training; namely, the perspectives, insights, and comprehensive wisdom that come with really living as an earnest physician trying to truly benefit patients and realizing that what may be the initial reaction to a situation isn't necessarily the most profound and comprehensive good, but that slowly but surely really living within the realms of final suffering and death one starts to see and make sense of what is termed on the one hand ethical and, on the other hand, just good for human beings. I mean, the common sense notion here is central to what you've said, I believe. But it's not just common sense in the easy impulsive immediate sense. It's in the comprehensive sense of seeing what it means to die.

I thought your comment at the end about the possibility that our technology is interfering with that, some potential benefit of the natural euphoria of imbalance of electrolytes, that's a fascinating comment. You have to wonder if we're missing some points.

But reflecting on your paper before your presentation, it struck me that so central to your general perspective is the notion that there are goals of medicine, that these are, at first, goals refined by those who encounter the realities, and somehow they make their way out into a general endorsement by the society.

And I just thought that one thing you could help us with a little bit here is, could you just say a couple of words about the strange struggle we seem to be entering in with our society trying to balance between extreme measures against which futility is a notion that precludes those extremes and a growing sense that — notwithstanding what you said about the public understands that there are some things that doctors shouldn't be doing — that we just witnessed the passage of a bill in Washington state to allow euthanasia, so-called euthanasia or active physician-assisted suicide.

 

DR. SCHNEIDERMAN: Yes.

DR. HURLBUT: Could you just say a little word about that and then just say a little bit more about how you think the goals of medicine become clarified?

DR. SCHNEIDERMAN: Do you want me to respond?

CHAIRMAN PELLEGRINO: Yes.

DR. SCHNEIDERMAN: Okay, thank you. Just to begin, the idea that standards, just as Dr. Hurlbut said, begin with the profession and then the profession proposes and then society disposes, and George Annas said the same thing.

I remind you that the Kansas School Board at one point was told by the public that they should endorse teaching creationism as a science alongside evolution. And you can bet that the majority of the public wanted creationism, believe in creationism. I think 40 percent of the public overall and probably a lot more in Kansas . The Kansas School Board said, "No. Our professional standards are we do not teach creationism as a science."

That's one way that medicine says, "Here is what we believe doctors should do, and we've got a history starting with Hippocrates," and, by the way, I just read another biography of Osler when Osler had this same notion of what doctors should be doing. We have a long tradition of this is what constitutes good medical practice, and we're not dispensers of the supermarket that we give whatever the public wants.

So I think we are achieving that. In California, what I kind of went over very quickly, just last month the California Medical Association endorsed this notion — which you can see in part on one of the slides — that physicians should not be obligated to do things which violate the general standard of care even though the patients insist upon them, that there is a limit to the obligations just as there are obligations: EMTALA, the Emergency Medical Treatment and Active Labor Act; I talked about the Baby K who was brought in recurrently with respiratory failure. And by the way, this is one of the faults that I had with the folks, the lawyers, who wrote the brief for the American Pediatrics Society that you might be interested in. They kept referring to Baby K, who could feel nothing, as "suffering" from respiratory distress. It seems to me that — and I later talked to judges about this — and, yes, they felt "distressed" meant she was "feeling pain." She wasn't in respiratory distress, she was in respiratory failure.

But what was happening then is that this was an infant brought into the emergency room and required ventilation. The Act that was being cited was a very important act, the Emergency Medical Treatment and Active Labor Act, also called the "anti-dumping" act. What was happening is that emergency rooms were taking patients who couldn't afford to pay, putting them in a car or an ambulance and shipping them off somewhere else and the patients often died. And the federal government said enough of that, and we have this federal statute. This is what was applied to Baby K.

Now I have to admit I was one of many who were very upset that, my goodness, this is not what they were thinking. Later the same Fourth Circuit Court which ruled in the first case in Brian versus Rectors said, "We're just talking about the emergency room. If patients go into the emergency room, you do what it takes to stabilize the patient." And I give this counsel, too. "If a patient comes into the emergency room and you don't know that patient, if you looked in past records that say no or if it's not likely or is likely that this patient will survive, you treat. You can always stop later."

And so the point is, an emergency room is a very special place where you go for it, and this kind of interaction between the profession which states its standards, the public which accepts them very usually — I mean, the huge outcry to the Terri Schiavo incident to me makes it quite clear that the public is on our side saying there are certain things that shouldn't be done. If somebody wants to do that, then let them have their own special location for doing it. But that's definitely a minority.

The interaction between the court, the professional standards, and what the public thinks when events happen, I think that this is slowly progressing. I personally think that things are happening. I mean, more and more hospitals are developing futility policies. Our experience is that they work. And we're distinguishing this from rationing, by the way, which is another big topic. I am not talking about rationing.

The difference as I see it, futility, whether it's cheap or expensive, should not be used because it doesn't work. Rationing should be applied only to therapies which do work — medicine allocation problems, heart transplant — it works. If we don't have enough hearts, that's a serious problem. How do we allocate? But heart transplants in somebody who is permanently unconscious, that's not a rationing problem. That's a futility problem because that patient would not benefit from the heart transplant.

I don't know if that answers you or not.

CHAIRMAN PELLEGRINO: Thank you very much. We will now begin the general Council discussion. I have Dr. Meilaender first on our list and then Dr. Dresser .

PROF. MEILAENDER: Thanks very much. The presentation was interesting. It raised a lot of questions for me, but I'll only ask one though I do have to say that I think we live in different publics, actually, because the public you described is not the public that I know.

But let me just ask you this question. You say that medical treatment may be futile, but comfort care is never futile. What I'd like to know is how you know that comfort care is never futile?

DR. SCHNEIDERMAN: Well, it goes along with my notion that there is always something you can do to care for a patient, to comfort a patient.

PROF. MEILAENDER: But, to use your own language, there may be patients who lack the capacity to appreciate it.

DR. SCHNEIDERMAN: Well, in those circumstances, then comfort care is not applicable. I mean, comfort care —

PROF. MEILAENDER: So there are patients that you just wouldn't be able to give comfort care to?

DR. SCHNEIDERMAN: Probably. If a patient is permanently unconscious, can experience nothing, we talk of comfort care as I defined it with dignity. And there is where we say — just like a dead body. A dead body can't appreciate what's being done to it, but all of us recognize that you treat dead bodies with dignity. And I would put it in that same notion. Comfort care though is for anybody who has any sapience, any capacity —

PROF. MEILAENDER: Well, would you turn the body frequently? That patient with no capacity to experience, would you turn the body to keep it from getting bedsores and so forth?

DR. SCHNEIDERMAN: Well, first of all, you're talking about a permanently unconscious patient?

PROF. MEILAENDER: Sure. That's my example.

DR. SCHNEIDERMAN: Yeah. I would discontinue life-sustaining treatment. So that wouldn't be an issue. In other words, what we know now is — and this is what hospice has taught us — if you force-feed — which is what you're doing with artificial nutrition and hydration — patients are either terminally ill and usually in a permanent unconsciousness, their bodies are incapable of handling the fluids that you put in. Unfortunately, I've seen instances —

PROF. MEILAENDER: But that's clearly not your patients in persistent vegetative states.

DR. SCHNEIDERMAN: Yes. It is, too.

PROF. MEILAENDER: I mean, they have lived for decades.

DR. SCHNEIDERMAN: They do. You can. That's good nursing care. Look, if that's your desire, to keep a permanent vegetative patient alive, as I said, it doesn't take much, a feeding tube and good nursing care, if that's your goal.

 

PROF. MEILAENDER: I'm not worried about my desire to. I'm worried about the definition of "futile." How do you know that that's never futile for such patients?

DR. SCHNEIDERMAN: Well, okay. It's the way we define it. You can accept it or not, as I say. We believe that the patient will never have the capacity to appreciate the effect, whether it's raising the blood pressure or treating the metabolic imbalance or treating infection or treating real things. If the patient will never experience a benefit from that, we call it futile.

You might say, "Oh, heck. I don't call it futile because this patient may be permanently unconscious but I'm fixing the kidneys to keep him going." That's physiologic futility. I disagree with that. But if there are those who want to keep people like that alive, I've already said that's a respectable alternative.

PROF. MEILAENDER: Let me try just once more. How about the severely demented patient and comfort care? How would you know that it's never futile?

DR. SCHNEIDERMAN: Okay. You're getting now to, how do we know that's — what is the term? How do we know what we know? This gets even worse with a minimal conscious state. There's a well-known case in California, the Wendland case, where Mr. Wendland kept pulling out his feeding tube and was apparently very angry at anything that was done to him when he couldn't speak in a way that we could understand what he really felt. The same is true of demented patients. And there I will accept that there are different views of this. There are folks who say our story that we construct now is that we will have a life that we would like to end in a certain way, with dignity and loving our friends being around, recognizing, and that's the life we would like to have.

Some of us will not have that. We will then get severely demented, and we will sit in front of a television set and smile. And there are people who say, what's wrong with that? And I will accept that, although I personally have executed a durable power of attorney so that I will not be maintained that way. In other words, we have choices about our life. And I think doctors can do something about it.

I'm not sure I understand why you are having problems with the futility when I'm trying to say, here's the way we define it. If you choose to define it another way, then you have certain consequences that go along with that.

PROF. MEILAENDER: I'm not worried about different definitions. I'm worried about incoherence in your definition.

DR. SCHNEIDERMAN: The incoherence? I'm afraid I don't understand where it's incoherent.

DR. FOSTER: Well, I wonder if I could comment. It seems to me that the comfort care that you're largely talking about would be in the situation of, let's say, hospice care for somebody who has cancer and so forth, and it doesn't have anything to do with the prolonged care of an unconscious patient. So I think that almost every physician would say that comfort care in the hospice situation is what all of us would want and want to do.

And Gil is asking, I think, a longer question. So I think that he's addressing a question that you are not addressing in terms of comfort care in the normal, if somebody doesn't — lots of people don't die in the six months of hospice care, but you still try to keep them from suffering if there is a way to do that.

 

CHAIRMAN PELLEGRINO: Thank you, Dan . We have three Council members already asking to comment. So I'd like to ask Prof. Dresser first.

PROF. DRESSER: Thank you. I have a couple of questions. One was, I was interested in your paper and presentation where you said, "Many hospitals have policies that would say continued treatment of patients who are permanently unconscious is futile." So I wondered — and then on the other hand, as you say, we have 30,000 or 40,000 people existing in that state.

My impression is that many families want that continued, and I'm not so sure what the public thinks about the case where when you don't have an advanced directive asking for treatment to be stopped and the family wants it to continue what they think of that view versus the Schiavo case where there was some evidence that she would want treatment stopped.

In any event, does this mean that hospitals are discontinuing treatment in cases of patients who are permanently unconscious against the wishes of the family based on a hospital policy? Is this happening a lot? I just haven't heard that it is.

Can I ask one other question?

DR. SCHNEIDERMAN: Sure.

PROF. DRESSER: The other one is, given that some of this is based on a values conflict, probably one of the strong examples is the patient in PVS. If the goal is to reduce the number of cases in which futile treatment is given by your definition, would it be more productive to focus on the physicians who often are the ones who are responsible in a sense for continuing this kind of treatment, either because they don't want to raise the issue, they don't want to give up, whatever, focus on that audience and less so on the cases such as in Texas where you have the family expressing a values choice, disadvantaged. It seemed as so everybody is ganging up on this poor family.

So I guess my question is, why not focus on the medical profession's contributions to futile treatment and try to address these unusual cases of family opposition in a more, as you put it, compassionate way?

DR. SCHNEIDERMAN: Thank you. Let me address the first one, do hospitals every now and then discontinue life-sustaining treatment for permanently unconscious patients? The answer is, yes; against a family's wishes, rarely, because it rarely happens.

In other words, people are constantly talking about how mediation and intensive communication and all of this is so important. We agree, and we do it, and it often works. It doesn't always work. But the consequences of it not working without having — the house staff that I work with are really glad they have this futility policy because it used to be that people would feel very helpless and upset. They want this and it makes no sense, and I have to do it and what's the point. And then you know the term "moral distress." The nurse is obviously the one who suffers along with the patient while all this is happening.

They have this futility policy and now I can talk to them and say, our duty now is to help the family cope with the patient's death and grief. Well, how do we do that? Well, how do we do a better job of communicating how we care about the patient? And we have a whole line that we say. You know, "You obviously love your mother and spent a lot of hard times working with her. We did, too. And now we all have to start thinking of a better way to treat your mother than just to do this." In other words, we really try to work with the family and they usually do decide to come along. When they don't, we have done it. And the paper that is the multi-center randomized control trial of ethics consultation in the ICU will notice that about, I think, something like a half a dozen families and doctors were unhappy with the outcome.

And if you want to look that paper up, it's in the Cambridge Quarterly and it has the title. It came out after that paper, so it won't be cited in that paper. I'm giving you the citation. And it's called the "Anna Karenina" Principle: "All Happy Families are Alike. Unhappy Families Are Unhappy, Each in Its Own Way." We did find families that were unhappy. We found doctors who were unhappy, nurses. We explored that because I really wanted to see, not only where we succeeded, but where we didn't succeed. And it turns out that the families were disappointed that the ethics consultant didn't spend more time with the family at the conclusion of the ethics consultation. And so we realized this, we'd become really bonded to the family and so, therefore, we owed them that much, not just, here's help, goodbye.

The other thing is, they didn't like the fact that the patient died. They couldn't accept that. Now, there's nothing we could do about that. But I have to emphasize, if you read the paper, they said that they still liked the ethics consultation. Why? Because they were heard. They said, "Even though we didn't like the outcome, we felt that they did what they could to hear our objections, our concerns."

That is, I think — again, I don't want to brag about this, but we've done it. And if we do it the right way, we've not been sued. And that's what doctors — and that's why doctors are doing it, by the way. You asked, how come doctors are doing this? They are very paranoid.

In every case including the Barber case in California, which established the logic for removing a life-sustaining treatment which you had already started, which made a point of the difference between effect on the body part and the benefit to the patient, which gave us very strong grounding for these kind of decisions. When doctors who know about that case, all they know is that a doctor was sued, was on trial, they thought, for murder. And that's all they want to know is that they never want to have any part of that. So that's part of the problem.

Did I answer all your questions? I mean — oh, and, yeah, we are working on doctors. I mean, I do this all the time. And we have medical meetings, ground rounds. I have to also emphasize that everyone talks about the power of physicians over patients and families. One of the reasons why we think there should be a definition and not just a dispute resolution policy which is what the Houston Consensus has — they just give you a lot of steps — the problem is, we've seen families who have power. They know if they call their local TV station, it will scare the docs and the hospitals particularly. So it's not just doctors who are invoking power in these matters.

CHAIRMAN PELLEGRINO: Thank you, Dr. Schneiderman . Can I alter the procedure just a little bit because the time is going and we have three Council members right now who want to comment. And may I suggest we give them a chance to comment —

DR. SCHNEIDERMAN: Sure. I'll be brief. I'm sorry.

CHAIRMAN PELLEGRINO: No, no, no. Make a note of their essential comment and I'll will give you an opportunity to put them together. I have Dr. Elshtain next.

PROF. ELSHTAIN: Dr. Schneiderman, thank you so much for your testimony. I'm sorry I came in a bit late. I did read the articles that we received ahead of time written by you and some of your coauthors.

Let me begin by very briefly suggesting that there may be an interesting discrepancy actually between your quote from Willa Cather's wonderful book — I know it's one of my favorites — Death Comes to the Archbishop, in which death is "not regarded as a moment when certain bodily organs cease to function," but that does seem very much to be your understanding of death. You've said a number of times in your testimony that you've described that futility is simply keeping a body alive or keeping certain organs going. So there might be some tension there that you might want to explore between Willa Cather 's understanding given that you cite her in your own.

But the questions that I have — and I'll make them very brief — go as follows. First, in the discussion about compassionate exception, you note that the physicians, those caring for the patient, "should" consider this possibility. And I wonder why it's not stronger, why it isn't "must" consider in your characterization of the proper procedures as you understand them because it does seem to me that often there's an element of trust that's very important and fragile between an attending physician and other caregivers and the family with the patient who is terminal or seems to be terminal. And I think that it would enhance that trust, would it not, if you said must consider these kinds of exceptions if you're going forward with these sorts of directives.

Next, following up on Gil Meilaender's discussion, I, too, was wondering about the question of — and it relates to his — the ability to appreciate certain effects that constitute a benefit, and I take it that you mean by that that it's not just some objective assessment of certain physiological operations within the body but the patient's recognition of some of these efforts, and I'm sure it has occurred to you before this moment that this can get very troubling when you're thinking about patients with mental retardation and so forth, generally, not even in a situation of a terminal illness, but more generally those who can't appreciate on some fully conscious level what's being done on their behalf.

And then finally, the issue about ethics consultations. I read that over, and I had a few questions about that. Perhaps it's just my ignorance. But I was wondering where the ethics consultants — how are these people trained? How are they licensed? What kinds of ethics are they trained in? Ethics is not a generic thing. There's the ontological ethics, there's utilitarian ethics, there's casuistic ethics. So just saying "ethics" doesn't tell us very much where do these people come from and who are they. Again, how are they trained? What is their connection to the family, if any? Who selects them, and so forth? So it would be helpful to hear a bit more about that.

CHAIRMAN PELLEGRINO: Thank you. Next is Dr. Schneider .

PROF. SCHNEIDER: We're spending the rest of the day on this topic, and the things I have to say will probably fit in almost any of the slots. So why don't I wait until then?

CHAIRMAN PELLEGRINO: Thank you, Carl . Next is Dr. Hurlbut .

DR. HURLBUT: No, I didn't have any further.

CHAIRMAN PELLEGRINO: Thanks. Paul, I'm sorry. You were so retiring, I didn't —

DR. McHUGH: Again, Dr. Schneiderman, thank you for your presentation. And I want to begin my comments by saying that you've touched upon a lot of situations that I think every doctor has been in, in some way or another, and I feel that the good faith effort that you're making about those things is obvious to doctors who are listening to you. And so, therefore, my disagreements with you are to be seen as collegial rather than anything else. And those disagreements, I think, will be the subjects of discussion all of this day because they relate, I think, to the different audiences that you're speaking to and that sometimes I speak to.

Gil has made the point that you speak about a public, and it's not the same public that I know. And the issues in relationship, for example, to the Oregon death with so-called dignity program and the data that are coming from that, I want everyone to know that the Oregon group refuses to let independent psychiatrists to come in and see those patients and understand those records in terms that might allow us to judge whether those patients are really choosing freely these cessations or whether they were under either family, social, or psychological pressure in making those decisions for themselves. So there's lots of things to be said out there that are problematic and tend not to be mentioned both in your paper and your presentation.

But what it really comes down to in my concerns about these matters and relating to the intrusions of the concepts of ethics into our practice is, what really are we trying to do with our practice, given that medicine is a practice that goes case-by-case, and it's delivered at some level by a particular person who is attempting both for himself or herself and the group that he's with to flourish and become better, not only at the practice of the technique of medicine but at the expression and the process of doing this and the more strenuous virtues that our profession has intended to bring out in people and make it such a salutatory career for anyone?

The gentler versions of compassion and sympathy and the relief of discomfort are a certain kind of virtue. But they don't speak to the virtues that doctors are intended often to try to reach for, and those are the virtues of strength and commitment and long-term courage and effort that when brought from case-to-case often help to, not only see what we mean in our relationship with patients, but not at all uncommonly bring, not in these last cases that you're talking about, but often in cases where futility is claimed but when real effort is produced and strong energies are given to the patients, in fact, bring good benefits to them.

What I'm concerned about with the growth of concepts like DNR and futility has been a conception of practice emphasizing sympathy and neglecting the energy, entrepreneurship, and effort that real doctoring can bring and which can be undermined by concepts like DNR and futility.

So it's more at the level of, are we producing a really challenging environment for our young people when we ask them to consider futility as a real concept or whether we're making it easy for them to explain away their own weaknesses.

CHAIRMAN PELLEGRINO: Thank you, Paul . Dr. Schneiderman ?

DR. SCHNEIDERMAN: Okay. Let me start. I'm sorry. I don't know your name.

PROF. ELSHTAIN: Dr. Elshtain, Elshtain.

DR. SCHNEIDERMAN: Elshtain. Let me go back to front because you hit on something that we're very sensitive to, and I just came back from New York, before coming back out here, an ethics-credentialing project. We're a group of us ethicists, clinical ethicists, who are getting together to try to decide how do we answer you. You're right that lawyers have degrees. Physicians have degrees. Many other health care professionals have certificates. Ethics consultants don't. And we learned at this meeting that there may be over 1,000 ethics consultants who call themselves ethics consultants out there. We don't know what they do, and we're very concerned about that.

Now I can assure you that the folks that were in that study, the multi-center study, are superb, clinically experienced, sophisticated ethicists. That's why I chose them, proof of principle. If I were to try to see this heart surgery work, I would certainly pick the best hospitals to get the heart surgeons to see if it worked.

But we recognize, and you're absolutely right. I'm very sensitive to that, that we're going to try to fix that. But you're right.

 

PROF. ELSHTAIN: Just this much on that.

DR. SCHNEIDERMAN: Yes.

PROF. ELSHTAIN: May I just add that I'm not sure that ethics can be credentialed in the way that a physician or a lawyer can be credentialed.

DR. SCHNEIDERMAN: Yes.

PROF. ELSHTAIN: That is, I would trust my Aunt Martha, for example, as an ethics consultant ahead of a number of people that I've encountered when I'm teaching ethics.

DR. SCHNEIDERMAN: You can cite all of the pages in the Boston phone book and —

PROF. ELSHTAIN: No, no. I think often ordinary people are a pository of good ethical sense. So I'm wondering just about who are these people and where do they come from.

And also then just a question that we assume that you can develop a kind of expertise in ethics that is analogous to learning how to do brain surgery. I couldn't think of —

DR. SCHNEIDERMAN: Yeah. And that's why I did the randomized control trial. I'm an evidence-based doc. I really am. And if you'll look at my bibliography I do lots of researching including doing advanced directives work. We showed that it didn't make any difference. That was my surprise to me. And what are the attitudes of men and women? So you're absolutely right. But it looked like in that one study — that's the only one that's — well, we did one at UCSD, but that randomized control trial — ethics consultation reduced what we called non-beneficial treatment, in other words, patients who died in the hospital, we reduced the number of treatments they got and the days they spent in the ICU. So there was an effect that I don't think your Aunt Martha would get. So there may be something there. But I'm willing to say we need to know more.

Yeah. Again, I just want to make sure you know that when we introduced this notion of medical futility, it was limited. In other words, some of you know that doctors are always saying, "It ain't worth doing." I mean, I've got to point out, and I've had ethics consultations where we worked hard with the family, and finally everybody agreed, yes, this patient should have surgery. Okay. We called the surgeon, and the surgeon looks at her and says, "I ain't touching this patient." So the surgeon made a futility decision, and they do it all the time.

So you're right that we haven't — now I would never ever say because a person is mentally retarded they are not achieving a benefit. We limit to the in-hospital setting and in particular the ICU. We limit it to the permanent vegetative state to say nothing about the minimal conscious state, which they probably suffer. But in our notion as we define it — and I would never invoke futility.

So we wrote another paper, Nancy Jecker and I, where we showed where futility is being misused. So I think we're trying to be very careful.

Oh, "should" versus "must." I think you're right, but the lawyers are always warning us, if you say "must," that puts you in legal jeopardy if you don't do something because you just said you must do it and you gave a very specific something you must do. So I think that is just "should." I agree with you that we must do it, but I think when it was written they chose "should" rather than "must." The lawyers here might help us out with that.

You talk about death? I think that one of the things that we should realize, that that was the 19th Century. I try to point out that some of the religious notions of life, being paramount to saving a life, had an assumption that life was coterminous with awareness. What we have done today with our high technology is made life not coterminous with awareness, that there is a long extra-bodily survival that we manage. Vegetative state is the disease. Persistent vegetative is the iatrogenic form of that disease. In other words, patients had a stroke or patients had cardiac arrest for eons. But it's only recently that we took that condition and then prolonged it.

So actually I want emphasize that what we're talking about is a difference that we have to look at historically.

I'm supposed to answer — okay. Your concerns are rather striking to me that you get a bunch of eager aggressive doctors who have gone to medical school learning how to do things and doctors who make a lot of money but also psychic rewards doing things and you're worried that we're going to undermine that to such a severe extent that they would no longer pursue that original impulse? I don't think so. I think that —

DR. McHUGH: Well, I have good evidence that you're undermining it. That's the evidence of ongoing abuse of the DNR process that occurs in house offices. That's data in the literature. The futility concept will act in similar ways. Whether you know it — I'm sure you do know it, that doctors are humans and that their willingness to go for the gentler rather than the more strenuous virtues is a constant temptation, and we have to work hard on them.

We even have now oaths in our medical schools that begin, not with the benefits of the patient, but looking out for the welfare of each other to the point that you might —

DR. SCHNEIDERMAN: Oh, the welfare of each other?

DR. McHUGH: Well, yes, of each other and me to the point where you wonder whether young people are being encouraged to recognize the strengths that they have rather than the fact that they get sleepy. So there's plenty of evidence out there, Dr. Schneiderman, that turning to the gentler virtues does sometimes cut back on the more strenuous ones, and it's in the literature with good data.

DR. SCHNEIDERMAN: Okay. I can also point out that there are instances where cardiac resuscitation was done over-aggressively. The SUPPORT study showed that physicians, in spite of trying to be informed about what the patients wanted, over-treated and all that. So, yes, we're human. We're imperfect.

I grew up in the era of what we called the iron man — we were mostly men — where we hardly slept. We were proud of the fact that we could do anything. That softer virtue has been improved upon. As a matter of fact, now I've learned, unbeknownst to me, I probably made lots and lots of bad mistakes because I was sleepy.

So we have changed the medical environment in terms of the softer virtues, but I — well, okay, this is a perception that I think probably goes in both directions.

CHAIRMAN PELLEGRINO: Thank you all very much. I think we can spend our recess until 11:00 o'clock .

[Applause]


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