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End-of-Life Decisions

BY | Kenneth Prager | Brian Lehrer | Stephan Mayer | Julia Quinlan | Tikva Frymer-Kensky

SESSION 1: How Should People Die?

Brian Lehrer Hello, I'm Brian Lehrer, host of WNYC-AM 820's "On the Line" in New York. We're here at Columbia University for Fathom to discuss a fundamental question confronting society today: How should we die? Here at the dawn of the twenty-first century, new technology and greater longevity together are enabling human beings to have more of a role in choosing the way we die. However common, though, end-of-life issues are among the most confusing ethical challenges confronting many families, doctors and lawmakers. In this Fathom Forum we will ask where the line is between refusing heroic efforts to prolong people's lives, withholding routine medical treatment, and actually killing people because it's what they, their families, their doctors, the state, even an insurance company might choose. With me today are Dr. Kenneth Prager, a pulmonologist and the chairman of the Medical Ethics Committee at Columbia-Presbyterian Medical Center; Dr. Stephan Mayer, a neurologist and the director of the Neurological Intensive Care Unit at Columbia-Presbyterian Medical Center; Julia Quinlan, co-founder of the Karen Ann Quinlan Hospice and the mother of Karen Ann Quinlan, a young woman whose name has become a byword for the legal and ethical dilemmas surrounding the treatment of terminally ill patients; and Tikva Frymer-Kensky, a professor at the Divinity School and the Law School at the University of Chicago and an expert in religious ethics, biblical studies, Jewish studies and women's studies. Let's start with you, Stephan Mayer. What is the problem, if indeed there is a problem, in end-of-life issues today? Stephan Mayer I think indeed there is a problem, and it begins with the fact that if you ask most people, "How would you like to die? How would you imagine this happening?" most people would say, "Oh, I think I'd like to be at home, in a state of peace and comfort surrounded by family members in a familiar environment." But the reality is that most Americans end up dying in intensive care units. Frequently, in that step toward the end, there are interventions, people are put on life support machines, and these things are done sometimes when it's clear it's not going to change the outcome. It can create pain and suffering, and worst of all it happens when people have already made it relatively clear that they would never want this to happen. It's well known from large clinical studies that many people at the end of life receive high-tech care that they never would have wanted, and I think that the main problem is that sometimes what individuals say they would want is, in the practical reality, not what they're getting when crunch time comes. Brian Lehrer Why don't they get what they want? Stephan Mayer A lot of reasons. There are a lot of societal and cultural barriers toward letting go, giving up, letting people go on their own terms. Julia Quinlan I think one of the reasons is that we don't listen to the patient. We just want to extend that patient's life without input from the patient as to how he would like to die and the treatment, or non-treatment, that he would want to receive. Tikva Frymer-Kensky I think there is another aspect to this issue, which is that we have drawn a distinction between not starting a treatment, withholding treatment and withdrawing it once it's begun. People who have begun life support where there's still hope that it could be of benefit for a patient feel that they don't know how to withdraw it, how to pull the plug--that somehow treatment is a problem, that somehow it's wrong. We haven't really made a distinction between using heroic efforts when they can help and taking them back when they're no more than palliatives for our own conscience. Brian Lehrer What is the distinction? Can you define it? Tikva Frymer-Kensky I think when it becomes clear that there is no benefit to the patient--benefit meaning either hope for cure or a relief for suffering or a meaningful addition to life, like dialysis, where there's not going to be a cure but there's going to be an extension of real life. So when there is any of those three, then there's a good reason to do everything we can to benefit the patient. But when that passes, we have to be able to reach a decision that death is taking over, and not have this image of combat (which we do), that we are fighting all the time. Brian Lehrer Dr. Prager, are those the kinds of questions you ask at the Medical Ethics Committee? Kenneth Prager These are some of the issues that we deal with. But, if I may, I'd like to go off a little bit from what is very often the party line, if I may use the term, to the problem of end-of-life issues in America. I think that doctors get a bad rap more often than is appropriate, at least in my experience. Part of the problem is that our own societal values and our own education have not kept up with the technology. I think, as Stephan said, yes, it's true that everybody would like to die peacefully, but the question is, when is it time to die? There's always the hope that something else may be done that may help the patient, so we don't know exactly when we've crossed the line between prolonging dying and prolonging life. That's number one. Number two, I think that there is still a problem with people elucidating their desires. People still have a lot of hang-ups about thinking about their own death; they have a fuzzy idea that they don't want to be a vegetable on a respirator. It's not very helpful, though, to physicians when they're dealing with complicated issues at the end of life. All of what has been said is true, but I think that there's got to be more education of the public. There has to be greater interaction indeed between patients and their physicians. As I say, I don't think we're keeping up with the technology; it's just exploding, and we're left behind to have to catch up. Brian Lehrer Dr. Mayer, is it your experience that patients are not communicating and that living wills or advance directives, as they're called, for when they would like treatment withheld don't supply specific enough information to help you in the situations you actually see? Stephan Mayer Discussion A living will is a legal document in which a person expresses in advance his or her wishes concerning the use of artificial life support, to be referred to should the person be unable to communicate such wishes at the end of life (Columbia Encyclopedia). Is it important to have a living will? I do neurological intensive care. The joke is that if you're my patient it's the worst thing that's ever happened to you. You've had some kind of devastating brain hemorrhage or stroke or traumatic injury to the brain. They're the cases where you know you can do a lot to pull somebody through. They can recover. But then there are the cases where there is just going to be profound and permanent and serious brain damage or death--take your pick. On these most critical types of cases, only 15 percent of patients have some kind of living will or various directives or health-care proxy; the majority don't. A large majority of these other individuals have at previous times with their family expressed their wishes to some extent or another. But I do think that it really is a dialogue between the doctor and the family and in this setting the patient is off the table now. He can't participate. Everything that's happening is happening to him, but he's not an active participant, so it's up to the family members, the people who love the patient, and the doctors to begin a dialogue to find out what the patient would really want, given this bad situation. I agree with Dr. Prager--I think that the hang-ups are on both sides. Doctors have not been trained how to pull back. We're always trained historically to go, go, go, save life, save life. A lot of doctors aren't even aware that you can legally turn off a respirator. They're afraid it may set them up for some kind of legal liability, which is not the case. With this free-floating anxiety, what you don't know just adds to the fear. Similarly, the family members are sometimes in a state of shock, and it's hard for them to come forward. So I think the physicians really have to engage the families and get the discussions rolling, and try to discuss the issues in a dispassionate way and find out what this patient would really want. Brian Lehrer Julia Quinlan, the case of your daughter and the fight that you waged to have her taken off a respirator really put the term "living will" in front of the American people for the first time 25 years ago. Are you disappointed to hear that statistic that only 15 percent of the people who wind up in that position seeing Dr. Mayer have anything like that? Julia Quinlan I'm not disappointed, because I knew what these figures were. It is sad that people do not complete a living will, because in that they can explain exactly what they do want and what treatments they want. But there are very few people who fill out a living will. My husband had one, and I have one, but my children don't even have one, and as someone here said, it's difficult for us to face the fact that we are going to die. It's difficult for us to explain the treatment that we would like to receive. But you said something about there being more choices out there for patients today, which presents another problem, because we find in the hospice, with cancer patients, that there are so many more choices for them, and they are willing to try different treatments. These give them the hope that they will be successful--but they aren't always. That's why I think what you said is so important, Dr. Mayer, that we need the doctor to be able to explain to the patient that, yes, it may be helpful, but it's not going to extend your life to be a meaningful life, and perhaps it is time that we just cease treatment. It's so important for them to have this communication, but I do find a lack of it. Tikva Frymer-Kensky I think that that's because it's almost too late. The doctors and the families are caught on the front lines of an issue that really needs to be discussed socially. We need as a community to think about dying as a part of life, to think about where we stop fighting the inevitable. How can we face death? What can we do once we accept the fact--for instance, with a cancer patient--that new treatments aren't going to help, and that there may be only months of life left? We have nothing in our society to guide a person to help them follow through to their own death once they've stopped fighting it medically. I think it's that absence that is the problem. We have nothing with which to, not embrace death, but incorporate the idea of it into our life. Because of that absence, the only thing we have are rituals of medicine beyond the point where they are really therapeutic. Kenneth Prager I also think that we as a society expect too much of living wills. I often challenge physicians who know all about these issues. I say, "Sit down and write me out a living will of precisely what you do and don't want done for you at the end of your life." And it's a lot more difficult than you think. You get involved in details, you get involved in all sorts of permutations and combinations. It's extremely difficult, even for the initiated, even for the physicians to be able to consider what every conceivable situation will be and what I do or don't want. I've almost come to the point where I think that the best thing is for an individual to pick out a health-care proxy who they trust, have general discussions with that person about the sorts of things they do and don't want done, and leave the details up to the proxy. I've seen some health-care living wills that are ridiculous. They are so incredibly complicated, with checklists saying, "If I have this I want this done, but I do want antibiotics. I don't want a ventilator; I want a little bit of a ventilator." It's almost like a Jackie Mason routine. It's just too complicated. I'm not saying, of course, that thinking about one's eventual demise and what we do and don't want is not important. It's very important, but the critical thing is to pick out an individual with whom you can have a discussion, and then entrust that individual with the decisions when you're no longer able to make them. Living wills are important, but I think we tend to expect a bit too much of them. Brian Lehrer Julia Quinlan, is that maybe a better way than a living will that goes into detail about what somebody wants and what somebody doesn't want? To just designate a person you trust? Julia Quinlan I think it's important to have a living will, and in the living will you should designate a person that you can trust. When my husband was dying, of course he had designated me as a proxy, and he knew that I would carry out his wishes, whatever they would be. To have it legal is very, very important, but it's important to sit with your family and to discuss death, so that they know what your wishes are. It's going to happen to all of us. It's important to designate a proxy before you become ill, while you are still able to make choices. You need to have a family member or a friend who will carry out your wishes. Sometimes problems can arise. For example, when the patient is suddenly dying and the whole family gets together and you have a relative come in from California that hasn't seen the loved one in years, and suddenly they're upset because they don't want you to carry out that patient's wishes. That's why it is very important to have it done legally, so that you can follow up the patient's wishes. Brian Lehrer Dr. Prager, you get caught sometimes between conflicting family members on your ethics committee tasks, don't you? Kenneth Prager Yes, we do. There are times when push comes to shove, when members of the family find it too painful to let go, when there will be a conflict within a family in terms of carrying out the patient's wishes. Sometimes when the patient's wishes are not specifically and precisely known, when there is room for difference in interpreting what the patient would want, we try to be of service in those cases. I think the ethics committee, in sitting down and talking things out, tries to arrive at consensus, but yes, there are definitely instances when the family themselves may not know. I should just mention one other thing, Brian, and that is that, generally, discussions like this are configured in such a way that it's presumed that it's the doctors who are, again, the bad guys keeping patients alive beyond what is "reasonable," or beyond the patient's wishes. Just as often in our committee work, we see scenarios where the family wishes to keep a patient alive when we would consider it futile in the sense of having that patient survive hospitalization and leave the hospital alive. I'm interpreting the term "futility" here in the very narrow sense that the patient won't live to survival. And I think that this happens, in my experience, at least as often as the other scenario. Doctors are frustrated because they feel cornered by family members, by a spouse, by a son, or a child, saying, "Continue, continue," and the doctor knows it's hopeless in terms of the patient's survival. Brian Lehrer Professor Frymer-Kensky, what about the ethics of a doctor trying to convince family members to let a loved one die? Tikva Frymer-Kensky I think in this case a doctor is an expert witness. The doctor is the one who says, "This is futile; this patient is not going to live to survival." And we place too much on the doctor if we want them also to make the ethical decision for the family. It's theirs to make, but I don't think the family should be left alone. I think society should be discussing certain guidelines about what is appropriate to do and what is not appropriate. And certainly the idea of survival to leave the hospital is a real criterion that should be generally accepted and known. The doctors, after all, are there to heal. And when they testify that healing is impossible, then the burden should be off their shoulders. Kenneth Prager However, when push comes to shove again, we rarely if ever go against family's wishes in those circumstances, and I can tell you that it happens with regularity, that nurses and physicians feel very badly about some cases where they feel they are simply prolonging the death of a patient, doing invasive things to this patient because the family is insistent. I don't think we have a great way of dealing with this problem. Tikva Frymer-Kensky No, that's why I said we need some nonmedical things that a family can do, so that they feel they're doing something to help the person face death. Because, at this point, demanding increased medical care really only helps the family think that they are looking out for the patient's interest. They're trying to do a last favor, and it's not a good one. Brian Lehrer What kind of thing do you think they could do? Tikva Frymer-Kensky I don't know, because we really haven't faced dying as a part of life. As a society, we haven't put our brains to what helps a person die, what doesn't help a person, what helps a person attain peace. We have this image--you know, "rage, rage against the dying of the light"--which isn't very helpful for a lot of people. On the other hand, a lot of my friends have died in denial and never gotten a chance to make peace with it.

SESSION 2: Pulling the Plug

Brian Lehrer Dr. Mayer, I understand you had a transforming experience that has changed your outlook and your practice. Can you tell us about that? Stephan Mayer When I started out doing neuro intensive care, curiously, I had relatively little interest in bioethics. When I was in medical school, my eyes would glaze over during ethics lectures. I was more interested in the technology. And what happened was, in the line of work that I'm in, increasingly I began to become involved in cases where we were removing people from life support because it was clearly a hopeless situation and that was clearly what they would want. The way I started, it was really something that I felt should just be between myself and the families. It was low-key and I was happy with that, until I had one experience where we withdrew life support for a woman in her fifties who we thought was being admitted with a fairly routine and reversible, treatable problem. She had myasthenia gravis, which is muscle weakness, and she got an attack of weakness--or so we thought. But then we found out that actually she had widely disseminated cancer in her lungs, and as each day went by she deteriorated. She perforated her bowel, her blood pressure dropped, her lungs were filling with fluid, and she was a picture of agony. She was still competent, had capacity, was writing messages saying, "Please let me go." The family came in, and, to make a long story short, once it was clear that she was only suffering and she really wanted to go off--and that's what the family felt strongly as well, that it was the right thing to do--that's what we did. We took her off the respirator. We had to give her relatively large doses of morphine to be sure she was comfortable, and I hugged the husband. That was difficult. The medical students were crying. This was really heavy. But I had a good feeling about what I did. Then, a week later, I got a phone call from my chairman saying that there was some word out that I had "killed" a patient and that I was to write a report of this event immediately for the chief of staff, and they were talking about suspending my privileges. It became just some kind of game of telephone where it got passed along: "Did you hear what happened? Dr. Mayer gave morphine!" Administrators and people in nursing were saying it--people who weren't there and just heard it secondhand. It was a difficult time for me. In the end, what ended up happening was that it was all reviewed. We met with the then director of ethics at the hospital and it turned out that it was a textbook case of an ethically perfectly OK thing to do, and the right thing to do, which I knew in my own heart. But it was a difficult experience. I really felt like I was guilty until proven innocent, and that experience made me realize that there are a lot of hang-ups on many levels, maybe from the institution's point of view. And I realized, in fact, that in order to take that patient off the respirator I had to do some real convincing of the consulting pulmonologist, though I really thought it was the most direct way and best way to deal with it. But there was a lot of hesitancy, and it was that experience that made me realize that this practice that I call "terminal extubation," which in the lay public we call "pulling the plug," is a completely ethically, legally sanctioned medical procedure, with a methodology. There's a way to do it, and it's perfectly OK to do in the right setting. Brian Lehrer How long ago was that incident? Stephan Mayer I think about five years ago now. Brian Lehrer Has much changed since then? Stephan Mayer Yes. In our hospital, absolutely. Things are changing, much for the better. And by that I mean that, without a lot of hard numbers, it's definitely my impression that in the hospital, more and more, people are removed from life support in futile situations where it's clearly a losing battle and it's clearly what the patient would want. And I've seen this in the other ICUs. The frequency with which we do this in our ICU increased over the first few years until we hit a kind of steady state. Brian Lehrer Professor Frymer-Kensky, he used the term "pulling the plug." Is that killing? Tikva Frymer-Kensky No. There is a difference between killing and removing an impediment to dying. And there are things we can do which prolong dying by placing impediments in its way. They aren't going to cure, and they aren't going to prevent suffering. In Jewish ethics, this started to be discussed, strangely enough, in the thirteenth century, where you wouldn't think they could do much to save the dying. Brian Lehrer We didn't have ventilators then. Tikva Frymer-Kensky No, and the examples are kind of silly in our eyes. Such as, if a person is close to death, and salt has been placed on the back of that person's tongue to prevent dying, or a woodchopper's noise is preventing dying, you are supposed to take away the salt and stop the woodchopper because this person needs to die and you are stopping it. That got codified 300 years later into Jewish law. But there has been a lot of dispute over the last 600 years. As we've gotten better and better at putting impediments to dying, it has become clear that we need to make that distinction. It's one thing to kill or withdraw something that can cure, and it's quite another to say this is no more than salt on the tongue. It's not really a medically sufficient thing. It's not helping that person; it's just some kind of a thing that we think will impede the dying. Brian Lehrer So somewhere between there and Dr. Kevorkian is the line? Tikva Frymer-Kensky Somewhere between there and Dr. Kevorkian is a line, but it could be drawn even closer. You don't have to make that big a leap. Brian Lehrer Is it worth taking a crack at it? Is there a practical function to trying to say where that line is in a given procedure, or in general? Tikva Frymer-Kensky I don't think we should leave it to professional ethicists, which we tend to do. We kind of warehouse it. We say the ethics committee will take care of it, and then we as a society don't have to think about dying. And I don't think we leave it to the individual. In Holland, where assisted suicide is legal, they've been seeing families that lay a guilt trip on the terminally ill to kill themselves before all the money is used up, to kill themselves because of the mental anguish to the family. They badger the patients. Clearly, we don't want that. We need to discuss these things. Brian Lehrer Dr. Prager, have you seen that happen? Families badgering their dying loved ones to pull the plug or allow someone to pull the plug? Kenneth Prager Thinking Points Do you think there is an ethical difference between euthanasia and removing an impediment to dying? What do you think is the defining line between these two procedures? I have had patients' families come to me with the following sentence: "Can we expedite things?" I've had that term used more than once. And I have told them no, we cannot expedite things. We can--and I make the distinction very clear--we can remove an impediment to dying, but we cannot hasten death. I think that it's absolutely crucial for the moral fiber of our society to maintain that distinction. Sometimes the line may be considered rather vague, but I'm opposed to physician-assisted suicide. I'm opposed to euthanasia. I am not opposed to removing an impediment to death. I think the case that Stephan mentioned was the right thing to do, specifically because the patient had requested it. The patient was suffering, and this was a case of prolonging death. But I can tell you that it's a very short line from there to seeing somebody who is suffering, whose wishes we may not know, and just giving them an extra dose of morphine. Brian Lehrer What is euthanasia, as you see it? Kenneth Prager Euthanasia as I see it is administering a drug to kill a patient who is suffering and to justify the administration of that drug by saying we have put the patient's suffering to an end. It is the act of taking a life. It comes from pure motives, shall we say, of stopping suffering, but I'm firmly opposed to it, because I think that it is a slippery slope. Let's say somebody had said, "If I get Alzheimer's and I'm very seriously ill with Alzheimer's and can no longer recognize my family, I want to be put to sleep. I want to be put to death." I think that's wrong, and I think there's a short step from that to thinking, Well, we have somebody who really never actually said this, but we know him well, we know he never would have wanted to exist in this condition. I'm sure that had they been able to they would say to give him a lethal dose, etc. These are slippery slopes, so the distinction between removing an impediment to death and hastening death is a very important one that should be maintained. Brian Lehrer Is anyone less sure than he is? That physician-assisted suicide and euthanasia, as he defines them, are wrong? Stephan Mayer Well, just starting and taking the tiniest nibble here, the first issue is one where, practically speaking, if you take a dying patient who has got a plastic tube in his trachea and you remove that tube, and you understand that it was really the main thing keeping him alive, you understand that he is going to die as a result of removing that impediment to death. You may be looking at an individual who is very uncomfortable--choking for air, hungry for air, what we call agonal respirations. I think the appropriate reflex is: My goodness! Because when we do this we say we're going to shift the goal of care from extending and prolonging life to making the patient as comfortable as possible. That becomes our number one goal. When we do this, we need to in many cases give a medication like morphine, which is a painkiller. It has sedative effects that put you to sleep and suppress breathing, and we give it when we see rapid, ineffective, labored breathing, what we would imagine is uncomfortable breathing. And then the question becomes, how much morphine can we give? In the patient I was describing, there were big questions about--among other issues--how much morphine was given. Was that appropriate, or not? I think that the answer is that you have to give as much as you need to in order to attain as much comfort as you can reasonably get, and no more. If the sedation hastens the dying process, that's OK. There's a name for that, the principle of double effect. And this is what we explain to families, that we're doing it just to take away the suffering and no more. Tikva Frymer-Kensky I think that the key is intent. If you intend to relieve suffering sometimes you will inadvertently hasten the death. But the key is the intent. Brian Lehrer Julia Quinlan? Julia Quinlan This is the same argument that we brought to court 25 years ago. We wanted Karen removed from the respirator. We wanted her to die in a natural state without the maze of technology. We weren't aiming to cause her death but just to keep her in comfort. That's all. We have been faced with assisted suicide in the hospice also, where a patient will ask the doctor to hasten death and he will just refuse. But of course I don't believe in assisted suicide or euthanasia, either. There is definitely a distinction. And also, in hospice, when we give them morphine, we have to be very careful, because we want to be sure that it does not hasten their death. If we feel that it is a situation in the home where the patient could possibly overdose on the morphine, then we just draw back or we have them use a patch so that this doesn't happen. We're very aware of this in hospice, and we will not hasten anyone's death.

SESSION 3: Weighing Life: Quantity and Quality

Brian Lehrer Julia Quinlan, you were a crusader 25 years ago to get your daughter removed from the respirator. Do you have some sympathy for the people who are crusading now for physician-assisted suicide, for what they think is an individual's right to choose how they die, or for a social good, so that families may make death more comfortable for their loved ones? Julia Quinlan It is an individual's right, I suppose, to choose how they die. I cannot approve of it, and I don't, and I think as a society it would be very dangerous if we were to legalize it. But you do have some doctors who are willing to assist in suicide. I cannot approve of that. I think that 25 years ago it was difficult for people to understand what we were asking for. They were under the impression that we were asking the court to kill our daughter, and that was not the case. We were just asking the court to remove what we felt was an extraordinary means and then to allow her to die. Kenneth Prager If I could just comment on physician-assisted suicide, Brian. I think we still have a long way to go in the United States before physicians are expert enough in dealing with the dying. We have become much better, as Stephan said, even in a short period of five years. We've come a long way in our own institution. But I still think across the country there is a lot we can do much better than we are currently doing to alleviate the suffering of dying people. I think that, if and when that time arrives--and I think it will, because I think a great deal of money, time and effort is being directed toward that effort--once we've arrived there, I suspect that the impetus in many cases for physician-assisted suicide will be less. It's also been shown that patients' requests may change from time to time, that a patient may feel particularly in distress or depressed at a particular time and then withdraw their desire for suicide after their needs have been ministered to, after depression has been treated, etc. But I think, again, the thrust of society should be in improving our care of the dying rather than in trying to get physician-assisted suicide legalized in more states. Stephan Mayer I think it's almost a shame that, in the popular press, Dr. Kevorkian and physician-assisted suicide are given so much attention. This is something that is really very rare, that happens to very few people. Remember a few years ago, in Manhattan, there was a woman who was chronically debilitated from M.S. and she just reached a point where she said, "I've had enough of this." And her husband gave her a lethal overdose of something, and that's suicide. But aside from these rare cases that gain a lot of sensation, much more common is the person who is in the act of dying and who basically crosses that line where he no longer has even the minimum cardiovascular function to maintain life. He's being kept alive on machines, and we have to accept the futility of the situation. But families and physicians and we as a society are hesitant and reluctant to basically stop this death-prolonging intervention, and that's the epidemic. This is what's rampant and this is where we hear these statistics about how a huge percentage of Medicare dollars are spent on the last two weeks of life--in ICUs--because of this reluctance to just let go. Julia Quinlan I think if we could improve the care at the end of life, and perhaps have the person not suffering so much, there would be little or no need for assisted suicide. We have an obligation to educate the public about their options. We find in hospice that the patient often does not fear death but fears suffering. And that's why pain control is important. Brian Lehrer Do you agree, Professor Frymer-Kensky? Tikva Frymer-Kensky That there would be less doctor-assisted suicide if we improve? Yes. If people had a way of facing not only that they wouldn't be in such pain but also that the treatment would be better, if they knew what to think about how to adapt themselves to the idea that they were going to cross into death, then there would be less. There are no rituals. There were, once upon a time. There are some ancient rituals and manuscripts that maybe we should look at again, but currently we have a vacuum, because we have not wanted to accept the inevitability of our dying. I don't want to accept the inevitability of my death. I mean, I know it's inevitable, but somehow deep inside me I'd like to live forever. Brian Lehrer Dr. Prager, do class issues ever come into play on the Medical Ethics Committee around this, if we're talking about poor people, non-English speakers, people with not much family, racial minority group members, very old people as opposed to merely old people? Those are all classes of one kind or another. Do they enter into our decisions, and always in the right way? Kenneth Prager I would say that these issues do not enter into the committee discussions. But these issues do come up when people of different cultures, for example, bring with them different cultural baggage. A recently arrived immigrant from China or India or Russia, say, will react differently to a particular medical situation than will a yuppie from New York City, and so in that respect the class issues enter into it greatly. But in our own deliberations, we obviously don't say, well, this person is poor or a minority and so therefore we're going to apply different standards. I think that we try to be on as level a playing field as possible. Brian Lehrer But say you have a homeless person for whom you cannot locate any family. That must be a very different kind of ethical challenge for you than somebody whose family has gathered around, and they're all educated. Kenneth Prager Yes, we recently had exactly such a case of a man who was found in the street, who was a known homeless individual. He came into the hospital with a severe surgical emergency, was operated on, developed catastrophic complications postoperatively, developed strokes, could not make his wishes known, was on a ventilator, and the surgeon came to the ethics committee and said, "What do I do? This patient is critically ill; we don't know how hard to push. The chances of this individual's surviving to leave the hospital are getting smaller and smaller each day. Where do we draw the line?" And that is a difficult question. In a situation like that, what we try to do is to put ourselves into the mind of every man, common man, reasonable man, and say, what would Mr. or Mrs. So-and-so want, if they were in this type of situation? I don't know what other rules there are that would be appropriate to apply. Just to say that we will do everything to the nth degree because we have no guidance from the individual seems unreasonable. On the other hand, to say, well, since this individual cannot express his wishes, we'll have a lower threshold for pushing on and let's call it quits now, also seems unreasonable. So we sat down, we talked to the doctors, and at a particular point we felt that the likelihood of this individual having any sort of existence that any other reasonable person would want to have was so remote as to make further aggressive intervention inappropriate. I suppose that maybe 1 or 2 percent of the population in a situation like that would say to do everything. We think that 98 percent of the population would say, "Enough." This very much guided our deliberations, and we said, "Enough." Thankfully, at that point, we felt we must continue ventilation and nutrition and hydration, but we would not put this person through the sort of surgery that might be necessary to deal with their particular problem. And we would not treat every episode of sepsis. Stephan Mayer A lot of times when dying, and certainly in a critical illness, the patient loses decision-making capacity. We then have to depend on our family members to act in our stead, and I feel very strongly about this. The people I feel the sorriest for are the people who are all alone in the world. You see this all the time. The elderly woman who outlived every relative, made it to 98, but then something happens to her and there are no relatives to go to bat. Or people in dysfunctional families where nobody likes each other and nobody even bothers to come in and call and see what's going on. Or the homeless individual. More often than not, these people end up getting more than is really reasonable and more than they would want, because in order to say, "Enough is enough," generally somebody has to step up to the plate and say OK. If there's no one there to do that, sometimes these are the saddest cases of all. And I really believe that, in the appropriate setting, when it's clear that death is imminent, and interventions are unwanted based on the patient's wishes, removing life support and allowing the patient to die in a comfortable way is an act of love. It may sound corny, but it only happens when there are people around who love that person very dearly. That's one of the essential steps. It's one of the essential things for us when we lose our ability to master our own destiny, for us to have the kind of death that we would want. Kenneth Prager Discussion When a patient is in a vegetative state, the end-of-life decisions often fall on courts, family members and doctors. Who should decide whether or when to take a patient off life support? Up until now we've been talking about mostly prolonging death situations where we deemed it futile for that patient to survive. The really difficult questions are quality-of-life issues, not just a question of whether the person will survive. You have a person in so-called persistent vegetative state. This is a patient whose eyes are open, who has random movements of his eyes, but who lacks any cortical activity, lacks consciousness, cannot interact with his environment. The patient is certainly alive, and patients like this, if treated aggressively medically, can sometimes live for years. Is this a life worth living? In the case of the individual I spoke to you about before, the homeless man, it was not a question so much of whether we could prolong this person's life; it was a question of whether we could keep this patient going when he was in a persistent vegetative state. There are other issues: patients with severe brain damage, with severe problems, again, where they lack capacity and cannot make their own wishes known, and even relatives are not quite sure whether their father, brother, sister or uncle would have wanted to have live with this degree of brain damage. These are really agonizing, difficult questions. Brian Lehrer Is that getting closer to killing, because, in that sense, you're passing judgment on the person's personhood rather than their physical capacity to live? Kenneth Prager I would say in situations like that, where it is a question of quality of life--not quantity, not survivability to discharge--we generally do not stop treating these patients. We assume that, unless there are advance directives, unless there is a health proxy who we feel can speak in this person's stead, or unless this person has given clear and convincing verbal evidence before getting sick that they would not want life support, a patient like that would be maintained on life support. Tikva Frymer-Kensky I think the category of quality of life is a really slippery slope, and we have to be careful to use it. There may be other categories that we can think of. Some have suggested the category of transitional state. Just as, to those who do not declare that it is a person, a fetus is in a transitional state to becoming a person, and therefore does not have the same claims to total protection that somebody who is alive has, so, to some thinkers, is persistent vegetative state really a transitional state to dying. The systems would shut down if you left them alone, and so you should leave them alone to shut down. How much brain activity indicates a person still in life and not in transition to dying probably needs to be looked at on a case-by-case basis until we have better medical measurements. Brian Lehrer So, just as with the abortion issue, we're really asking what it means to be human? Tikva Frymer-Kensky Yes, absolutely. The people who have that kind of severe brain damage and are on their way out have a lot of similarity ethically to the people on the way to becoming human. Kenneth Prager Except that, as opposed to abortion, we're not asking what it means to be human and saying that the person in persistent vegetative state is not quite human and therefore we can kill them. In abortion, we take the life of the fetus, and I don't think anybody is advocating taking the life of people in persistent vegetative state because they are subhuman. They have rights, they are just as human as you and I, even though they have profound brain damage. The question is really how aggressively to sustain their life and, at least in New York state, which is one of the most conservative states on this issue, such a patient has to be maintained alive unless one of those three criteria that I mentioned before were met about advance directives, or having a surrogate or proxy, or clear and convincing evidence. Stephan Mayer I think one of the cornerstones of bioethics is this principle that all of us have a right to refuse any kind of treatment that we don't want. If you're sick and you need some kind of operation to live, and the surgeon says you need this operation to live, you have a right to say, as crazy as it may be, "I just don't want it." They can't attack you and assault you and do the surgery if you don't want it, even if the consequence is that you will die. People who are in vegetative states are a vulnerable population. They're vulnerable because they're not able to go to bat for themselves. Things will just get done to them. But I think anybody in a vegetative state who has made it clear that they wouldn't want to be prolonged indefinitely in that kind of situation has a right to say, "I don't want these things that will prolong me." What that amounts to is the artificial feeding, and eventually when you're in this condition you get medical complications that need aggressive care. People have rights to say, "I just wouldn't want to have these things done to me to make me continue on and on like that." Julia Quinlan You have to draw a line, though, on the aggressive care. When Karen was in a vegetative state, it was a very, very difficult decision for a family to make for someone you love, for your own daughter. But you do not have to just ask to have the person removed from the ventilator; you also don't want to continue with aggressive care--the feeding tube and so on. We refused to have a feeding tube in Karen. But she still lived for 10 years, and so you just don't know. But it's a very, very difficult decision to make. I wouldn't want to see anyone have to make that decision for a loved one.

SESSION 4: The Economics of Prolonging Life

Brian Lehrer Does money legitimately come into play here, ever? Does it come into play in ways we're not addressing? Kenneth Prager You asked two questions: Does money come into play? Does it legitimately come into play? I'll answer the first question first. Yes, money comes into play whether on a conscious or subconscious level. I think that, given the crunch that hospitals are feeling across the country in terms of their budgets, in terms of the difficulties that hospitals encounter with managed care and reimbursement, hospitals are going to react negatively if they see their intensive care units populated by people with minimal chance of leaving the hospital, people who are being kept alive on ventilators. That message will filter down one way or another to the people who are responsible for the care of those patients. You asked if money legitimately comes into play. I think that it is a legitimate concern. It's a legitimate ethical concern, because I don't think that we have an unlimited budget for medical care and we don't have unlimited facilities. In a particular hospital, it may not make a major difference, but, countrywide, somewhere or other we are going to feel the pinch if tremendous sums of money are spent on patients who have, say, minimal chance of survival to discharge. Programs will be endangered. I'll give you an example. At our hospital we have a program of heart transplantation. It's a very expensive but a very wonderful program, and there are patients who, in transition to heart transplant, are placed on what is called an LVAD, left ventricular assist device. It's a very resource-intensive intervention, a very labor-intensive intervention. The problem arises really with a patient on an LVAD device who is not a candidate for heart transplantation because of supervening medical complications: how long can a patient be kept alive on this device? Now, it's fine to say just keep him alive until you can no longer treat him. But if the program did that it would cause such financial hardship to the hospital as to bring into question the financial viability of the entire program. That would mean lives lost because people couldn't get transplants. So these economic questions have real ethical and medical applications. Tikva Frymer-Kensky I think that's absolutely true. We don't see it because it's all diffused and impersonalized. But with a population that's growing and a limited amount of dollars, we're in a lifeboat situation, and at some point either everybody starves or you start rationing, and you triage. In conditions of triage, we might say people in persistent vegetative states cannot be kept alive at this hospital more than six months in that state--at that point we will no longer treat them. Brian Lehrer Dr. Mayer, do you ever think about that when you're treating an individual patient or communicating with their family? Stephan Mayer No. In a global way, if there were better guidelines I think it would be good, but the practical reality, at least in the United States now, is that we have the luxury so far of never having to think about the economic issues. We just don't. There's no reason to. We don't have our act together enough to make these issues. We have the luxury of dealing in a more perfect theoretical world where we're just trying to do what the patient wants and what the family wants. Discussion Do you think economic resources should play a role in end-of-life decisions? Hospitals are facing increasingly tight budgets, inadequate space and limited resources. Decisions made for one patient can impact the health and survival of many others. We'll get situations where all the ICU beds are full--this happens every winter--and there may be several specific patients in some of these beds who are not going to benefit by staying in there. But the family insists. On top of that, the patient clearly wouldn't want it anyway, but the family doesn't want to give up, they feel guilty, they have a hang-up. And then you have the next patient roll into the emergency room--a young person, with something they can recover from, but they've been intubated, they're on a respirator, and where do you put them? And this creates a kind of a triage. What will happen is, this patient may be in the emergency room, sometimes, in our hospital, for as long as a day or more, and for the critically ill, that setting is not where you need to be. That puts that patient's life at risk, because there's only so much resource. Kenneth Prager Let me just reinforce what Stephan said. When I answered you before, Brian, I didn't mean to imply that this is actually taking place today--you've reached the one million mark, you're out. It doesn't happen that way, but I think it's going to be more and more of an indirect consideration as the years go on. Brian Lehrer I got what I considered a shocking letter from my HMO a few years ago. It was just a form letter that they probably sent to the tens of thousands of people who were insured by them, but it was to remind me that I had the right to make a living will or other document that expressed my end-of-life desires. Now, that's all they said, but you know what the subtext was. Kenneth Prager Did they encourage you to reject all treatment? Stephan Mayer But getting back to where we are now in the United States: given the limitation of resources, my feeling is that the real place to start again is with the fact that many patients are having these high-tech deaths that they really don't want anyway, and we're just reluctant and slow to face the implications. If we're not going to keep pounding away on the patient, which is what we call it, then what are we going to do? Some hospitals have pioneering pilot projects where they've got a palliative care team. Once the decision is made with doctors and families that we're going to change the goals of care, this team swoops in. They've got counselors, they've got clergy, they've got a game plan: This is what we're going to do. There's a special section in the hospital we're going to put the patient in, and I think that improves the level of care and makes it easier to make that decision. It gets back to really listening and respecting what the patient would have wanted. Kenneth Prager I'm just going to disagree with Stephan a bit to inject a little controversy here. I don't think that that is as much of a problem today as is often touted to be the case, at least in the ethics consults that we do. Physicians flagrantly going against a patient's expressed wishes even to their relatives--I just don't see it all that much. I think we're getting much better at limiting. I think the problem is that, in cases where patients have not made their wishes known and because of our increasing technical sophistication, there's always a ray of hope. Now, that ray may be very small, but it's there, and I think that this keeps things going in many cases beyond the point where it's appropriate. Brian Lehrer How fast is technology changing the nature of this whole discussion? Kenneth Prager Tremendously. I've been at Columbia for 27 years, which seems, I guess, like a long time, but it's not a long time. And it's night and day. Just in the past five or six years there have been developments in intensive care, surgical techniques, pharmacologic drugs and so forth. Take the treatment of AIDS, for example. I'm old enough to have been a physician when AIDS first came on the scene in about 1982, and it's a totally different disease today. It's gone from a disease that killed people within a few months of diagnosis to a chronic disease where, when you take the appropriate medications, you can live for 10, 15 or more years, like with diabetes or coronary disease, and other things as well. It's similar to the revolution in cardiovascular disease and transplants and assistive devices and so forth. Now all of these kinds of patients eventually do get into trouble, and there's always one more chance of keeping them alive a bit longer, even in the treatment of cancer. Chemotherapy of lung cancer, which is my field, is much better today than it used to be. Patients who used to be considered hopeless are now given options. So, again, I think that the technology is always a few steps ahead of the societal values and our ability to cope and decide what to do with this technology. And it seems to be continuing at that pace. Brian Lehrer Have you seen that on the front lines in neurology? Stephan Mayer Thinking Point How have developments in technology in the last ten years affected the treatment of patients who would once be considered terminally ill? List three ways new advances have impacted end-of-life decisions. Oh, absolutely. The people we used to get, in a comatose state with a brain aneurysm, were until very recently written off for dead. We're now aggressively treating those patients and, amazingly, sometimes they do well--not always, but sometimes. And what about elderly people who were written off before? I mean, the envelope keeps getting pushed. Brian Lehrer Doesn't that present you with new kinds of dilemmas in terms of who lives and who dies? Stephan Mayer It's an ongoing dilemma. Now we're confronted with these kinds of issues, particularly when we take an aggressive approach to give somebody an honest chance. We say to the comatose brain-injured patients, "We're going to give you a one-week trial of the full-court press. We're going to give you everything, even if it looks quite desperate." And my practice has been to start working with the family right from the beginning. We say, "I'm going to be able to look you in the eye and say to you that we did absolutely everything." In fact, sometimes other people in the care team may roll their eyes and think we're going too far. But the idea is that in a week we're going to see where we're at, and if the patient seems to be getting better, and if that ray of hope is widening, great, we'll keep going. But if we really give it the full-court press and it's clear after a week that we're not going to get a good outcome, no way no how, we tell them to be prepared about what the next appropriate step might be. Basically, you can keep the brain-injured patient alive, but that involves putting in a tracheostomy tube and a feeding tube, and the plan is that the patient is placed in a nursing home, and there you are. For some people, that's not their cup of tea. So when we get to that point where we tell them we have to decide if that is going to be the plan, the other alternative is to say we're going to pull back, we're going to stop the machines and switch the goal of care to comfort. Brian Lehrer Do people in hospice have to be up on all this, or does your role come once those decisions have been made? Julia Quinlan I would say that, once the decision has been made that the patient cannot survive, that the patient is going to die, then we just do palliative care, which is just to make the patient comfortable. Because the hospice is Medicare-certified, the doctor must state that the patient has only six months or less to live in order for the patient to be admitted to the hospice program.But the problem is that patients associate hospice with death. We have established a transition program where we can care for a patient for a year or a year and a half, and then, as their condition worsens, they can just make the transition into the hospice program. Tikva Frymer-Kensky We are making strides. Just a few years ago, when an approach like the one you describe would have been impossible, people would say they had relatives in this situation and the doctors would say, "If we try this, we can't ever withdraw it, so we'd better not try it, because it might not work and then we're all in a legal bind." And that was a terrible thing, because people didn't try when they had a chance, and so I think that there is a real advance on that issue. Now we can try as long as we think there's a ray of hope that's reasonable, and then say, "Look, we did all we could reasonably do." Now we have to change the mode of care and the goals of it. Brian Lehrer Well, we're almost out of time, and I'm curious where each of you think this discussion will be in 10 years. Dr. Mayer? Stephan Mayer In 10 years. I think we will have come a long way, I really do, and I'm very encouraged by the kind of progress that I've seen at our institution and at others and in talking with colleagues. I'm not sure exactly what the issues will be in 10 years, but I think we're going to be a lot more enlightened, and I'm confident that patients are going to be more likely to receive the quality of care that they really would want. Brian Lehrer Professor Frymer-Kensky? Tikva Frymer-Kensky I would like to see more discussion of the way to meet death and what to do for patients in terms of both palliative care and emotional support. And perhaps even the development of social rituals for saying good-bye. I am afraid that there will be more worry about economic resources without a general discussion of guidelines, because I think the economic crunch will sooner or later become more visible, and if we don't discuss it generally then we're going to deny help to those who really could benefit. Brian Lehrer So 10 years from now we'll be talking more about money? Tikva Frymer-Kensky I'm afraid we will. Brian Lehrer Julia Quinlan? Julia Quinlan I'm afraid I have to agree with you. But I think we have come a long way, and we need to continue to communicate with the patient and with the family. After hearing the discussion from two doctors here today, I'm really impressed, because I'm not quite sure that this occurs in every hospital. In New Jersey or in New York, I think that this may be the exception to the rule. But if we could encourage doctors to sit down with patients and discuss their care, and to talk to the families and say there is no reason to extend the treatment because it is fatal, that would be a big help. Brian Lehrer Dr. Prager? Kenneth Prager Ten years from now, when the baby boomers are Medicare patients, we're going to be discussing money--no question about it. I think that more states will have legalized physician-assisted suicide, I think there will be a push to legalize euthanasia in the United States, and I think that the technological advances will be increasing the number of ethical dilemmas. You'll be asking questions about things we can't even fantasize about now. I think we'll have a great discussion. Brian Lehrer Well, I hope we can convene again in 10 years for another great discussion and see how your predictions have held up. Thank you all. Stephan Mayer Hopefully, we'll all make it. Brian Lehrer Right. I'm Brian Lehrer for Fathom.

ABOUT THE AUTHOR

Kenneth Prager

Kenneth Prager is a pulmonologist at New York-Presbyterian Hospital. He graduated from Harvard Medical School, did his internship and residency training at Columbia, and was chief medical resident at Billings Hospital, University of Chicago. Prager spent two years as a physician in the Indian Health Service at Eagle Butte, South Dakota.

Currently, Prager is clinical professor of medicine at Columbia College of   Physicians and Surgeons and attending physician at Columbia-Presbyterian Medical Center, New York-Presbyterian Hospital. He has been on the hospital's medical   ethics committee since 1992 and has been chairman of the committee since 1994. He has been director of clinical ethics since 1998. Prager lectures on various topics of medical ethics and his articles on these subjects have appeared, among other places, on the Op-Ed page of the New York Times and the editorial page of the Wall Street Journal. He teaches medical ethics and pulmonology to medical students, house staff and fellows.

ABOUT THE AUTHOR

Brian Lehrer

Brian Lehrer is the creator and host of "On the Line," WNYC's successful and highly acclaimed daily call-in program covering local, national and international news issues. WNYC is the National Public Radio station in New York City. Lehrer is the former host of "On the Media," a weekly media review program heard nationally on NPR.

Time magazine has called Lehrer's daily show "New York City's most thoughtful and informative talk show." The Daily News calls it "the sane alternative in talk radio." Guests have ranged from political figures such as Hillary Clinton and Rudolph Giuliani, to authors and entertainers such as Alice Walker and Al Franken, to junior-high-school students and homeless people.

Lehrer has hosted "On the Line" since its inception in 1989. Before that, he was an anchor, reporter and environment correspondent for the NBC Radio Networks for seven years. He is also an award-winning author and documentary producer. Among his awards are the New York Press Club's prestigious Heart of New York Award, for his documentary on new immigrants and a New York Public Library award for his book The Korean Americans. "On the Media" was named Best Weekly Show by the Public Radio News Directors in 1999. Lehrer was awarded the Associated Press Best Interview Award in June 2000.

Lehrer hosted television programs on WNYC-TV from 1990 to 1995, called "New York Hotline" and "Dialogue With Brian Lehrer," and on WNET-TV from 1996 to 1998, called "Thirteen on the Line."

Lehrer holds master's degrees in public health from Columbia University and journalism from the Ohio State University and a bachelor's degree in music and mass communications from the State University of New York at Albany.

Lehrer lives in Manhattan with his wife and their two young sons.

ABOUT THE AUTHOR

Stephan Mayer

Stephan Mayer is assistant professor of neurology (in neurological surgery) at the Columbia University College of Physicians and Surgeons and director of the Neurological Intensive Care Unit at the Columbia-Presbyterian Medical Center, New York-Presbyterian Hospital. He is a graduate of Brown University and Cornell University Medical College.

Mayer is the recipient of an American Heart Association Grant-in-Aid Award for support of research on cognitive dysfunction and quality of life after aneurysmal subarachnoid hemorrhage. He was also the recipient of a National Stroke Association Research Fellowship Award for research focusing on regional cerebral blood flow during the acute stage of subarachnoid hemorrhage.

Mayer's research interests include clinical testing of hypothermia and hemicraniectomy for acute ischemic stroke, neurogenic cardiac disturbances and end-of-life care. He has authored more than 100 original research articles, case reports, review articles and abstract presentations.

ABOUT THE AUTHOR

Julia Quinlan

Julia Quinlan is chairman of the board of directors and president of the Karen Ann Quinlan Charitable Foundation and co-founder of the Karen Ann Quinlan Hospice. She is the mother of Karen Ann Quinlan, a young woman whose name has become a byword for the legal and ethical dilemmas surrounding the treatment of terminally ill patients.

Quinlan's interest in end-of-life care began in 1975, when her daughter Karen Ann fell into an irreversible coma. Julia and her husband, Joe, went to court to fight for the right to have Karen Ann removed from a respirator and won,   in a landmark decision of the New Jersey Supreme Court in 1976. The Quinlan case produced the first judicial ruling in the United States to permit the removal of life-sustaining medical treatment from a permanently incompetent patient. From the fight mounted by Julia and Joe Quinlan have come decisions and actions with far-reaching impact, including the development of the living will and the advance directive and the establishment of ethics committees in every hospital in the United States.

ABOUT THE AUTHOR

Tikva Frymer-Kensky

Tikva Frymer-Kensky is professor of Hebrew Bible at the University of Chicago Divinity School and adjunct professor of biblical law at the University of Chicago Law School. She was formerly director of Biblical studies at the Reconstructionist Rabbinical College and visiting professor at the Jewish Theological Seminary, Hebrew Union College-Jewish Institute of Religion, Ben Gurion University of the Negev, McMaster University and the University of Michigan. She received a B.A. from City College of New York in ancient history, a B.H.L. from the Jewish Theological Seminary College in Bible and Talmud, an M.A. in Semitic languages from Yale University and a Ph.D. from Yale in Assyriology.

Frymer-Kensky is a well-known scholar in four distinct fields: the Bible, the ancient Near East, feminist criticism and contemporary Jewish theology. She has written In the Wake of the Goddesses: Women, Culture and the Biblical Transformation of Pagan Myth (1993) and Motherprayer: The Pregnant Woman's Spiritual Companion (1995). She is also one of the authors of Feminist Approaches to the Bible (1995) and is currently working on Victors, Victims, Virgins and Voice: Re-Reading the Women of the Bible and The Judicial Ordeal of the Ancient Near East. Frymer-Kensky is the English translator of From Jerusalem to the Edge of Heaven, by Ari Elon (1997), and is one of the editors of Gender and Law in the Bible and the Ancient Near East (1998).

Frymer-Kensky is very active in interfaith dialogue. She is a member of the theology panel of the International Conference of Christians and Jews, on the Jewish Scholars panel of the Institute of Christian and Jewish Studies, and part of the task force on pluralism for the World Council of Churches.

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