Session Two: Time--Counting the Moments/
Making Moments Count

Discussion

GAIL GREEN, PANEL CHAIR: I think I'm going to turn to the panel, and ask whether any of them has a response to anything that has been said.

MICHAEL WITMORE: Well, I wanted to say a little bit about the historical context of anxieties, about suddenness and death. I think I probably short-changed that topic. Memory is not a black box. And at least with Calvin's Institute, which was published in many editions in England, in the late sixteenth century and through the seventeenth century, we get a lot of arguments about what one should do when one sees an accident or a sudden death. And the usual recommendation is to regard and wonder at the event. And this is taken up in English popular print literature, which chronicles accidents both in England and in Europe and Ireland, and is always urging the virtual spectator who reads that pamphlet to look at the incident and then expect in some way that it might happen to you. I found probably between seventy and one hundred of these pamphlets or short books published between 15 A.D. and 1630.

One of the ways in which this desired posture is described, and I think it's the posture of readiness, is as a kind of split vision. So William Perkins, a Puritan theologian who publishes a long book in 1600 called The Golden Chain, describes how you should with one eye fix on the disaster, and then with the other eye, your spiritual eye, focus on God. It's this odd kind of divergence of vision which, if cultivated, will prepare you for what can't be anticipated.

But I think, certainly, it's not just a theological position, it's a practice, and it's one that's encouraged by popular print and narratives of the kinds of disasters that are happening all the time in London. For example, where there's no fire department there are a number of fires, plague is breaking out all the time, etc. In short, there is a very visible confrontation with death.

back to top

GAIL GREEN: Yes, that divergence of vision I thought was terribly interesting. It's something that is also implied when you take a photograph of a dying person or when you start to write about a dying person. You find yourself, as I have found myself, there and not there--kind of there participating to a great extent, and drawing back and observing, and trying to make it into something artistic or meaningful. And when you described your accident you had somewhat that same response that you were talking about, somewhat divided as you observed what were almost your own last moments. But then it wasn't your death, so you don't really know.

LAWRENCE SCHNEIDERMAN: I want to respond to Dr. Tripathy with a quick point about time. I talked about time in some ways, but he mentioned a very important one, the time spent between the doctor and patient. I am very concerned about the erosion of that time, and I have some specific empirical data, which I'm sure is going to offend someone here.

About twenty years ago, we did an interview of patients in the Bay Area who were seeing homeopathic practitioners. Now, I think homeopathy is quackery, it's sheer quackery. But we interviewed a hundred patients. These were people who knew about science, were very highly educated and sophisticated. They had chronic illness that was incurable by our technology. What they got from the homeopathic physician was something very interesting. Each patient would be asked at great length and in great detail, her or his specific symptomatology; each was individuated over a long period of time. And there was a great deal of time devoted to this process.

What we do in contemporary Western medicine is take each person with a set of symptoms and lump them together into a category--"Oh, you're heart disease, you're lung disease, you're kidney disease." And so we de-individuate them. And then that's compounded by the fact that now, with managed care, we are forcing physicians to do this in less and less time, in order to get the output going.

DEBU TRIPATHY: Apart from time, which is clearly a critical factor, we lack a role model. We all lack role models in how to die, or most of us do. It's not something that we are acculturated to. It's a very foreign thing. And it's foreign to physicians as well. Physicians-in-training do not get the kind of mentoring and role modeling that they once got. Their ideal role model is someone who can recite biochemical pathways and knows pharmacology and molecular biology and can make an astute diagnosis. However, for those of us who treat people with cancer or any chronic illness, the diagnosis is the beginning, not the end. And so it's everything that comes after that that is important. Some of the medical school curricula now are paying some attention to role-playing and role-modeling, although I don't know if they can find instructors who know how to do that at this point. But in addition to time, I think there's a way to know how to do it.

back to top

And, you know, there's an incredible fragmentation in medical care too. You don't only have your doctor, you now have the advice nurse, and you've got the case manager and the social worker, and you've got a lot of other people who are trying to work in a team. But, clearly, they have their own opinions and sometimes they can actually give you mixed messages.

So it really does fall on the physician, I think, still, even in this modern era, to be the primary person to provide the solace, as well as the advice, as well as the medical care. And I don't know what the future of this is going to be. You know, being at a university practice, I've been able to hold onto my half-hour appointments for follow-up and one hour for new patients. But that's very unusual in the field; most people have half that amount of time. And I'm concerned about that. That's one area of medicine where I don't have an answer as to where we are going. I'm very optimistic about technology and other movements in medicineÑadvocacy and all thatÑbut I don't have an answer for the time factor. It's a precious commodity for everybody; not just physicians, but everybody has less time.

GAIL GREEN: I'm going to throw this discussion open to the audience.

ERNEST LANDAUER: Ernest Landauer [Bay Area Funeral Society]. A practical suggestion. The focus is still on the profession, but how do people learn to be patients? There are still many people at subsistence level or below, to whom the whole practice of medicine is out of bounds because they can't afford it. So one of the undertakings that seems to be very important is that in primary and secondary education there be included in health studies how you take on various roles, including the one of being sick, of being a patient, in a highly technologically ramified society and a highly monetized society.

DEBU TRIPATHY: That's a very interesting point. There is an emerging field called collaborative care, where we try to teach our patients how to use resources and time wisely, and how to choose the questions that they might ask. So it's a very new project that we've started to undertake. But, I must say, the patient that comes armed with questions and an agenda strikes fear in the heart of many physicians because they see this as a big time-sink; they see this as requiring extra explanation and even research. It carries a negative overtone in the medical community. It shouldn't. I think that the inquisitive patient might take some more time initially, but I think in the long run, the well-informed, satisfied, well-read patient is going to take less of your time and enter into a more satisfying relationship with the physician.

back to top

Many times when patients come to see me with breast cancer, they do take a very long time, especially if they've read a lot and read things on the Internet. It does take me more time. But what I spend my time doing is teaching them how to be good researchers of information. I give them some guidelines on what is good information, what is bad information, what is trustworthy, what isn't, what they should look at in clinical anecdotes versus clinical trials, and how they should apply that information to themselves. And over time, I actually find that our subsequent visits take less time because they are actually doing a lot of the work themselves.

TONY BECK: IÕm Tony Beck, University of Washington. I wanted to ask the panel to reflect on the question from this morning about what people need when they're dying, especially since you've all talked about technology in different ways. It strikes me that maybe technology distorts the whole issue a little bit, and I'm wondering if that has to be so. I'm an oncologist also, and I see that patients, if you ask them what they need when they're dying, would say, "I need more options." And one of their options needs to be "Maybe IÕm not dying." I'm thinking about the Bristol Myers Squibb commercial for chemotherapy I saw on CNN. It shows Lance Armstrong winning the Tour de France. Patients see that he thought he was dying, and actually, he turned out fine. He won the Tour de France.

LAWRENCE SCHNEIDERMAN: One phrase that I try to have students interpret in a meaningful way is, "Do everything." Dr. Tripathy mentioned that patients say, "Do everything." The family says, "Do everything." And immediately we tend to interpret this as CPR, ventilator, dialysis, and all those technologies. When, in fact, at some point, it's comfort care, and it's definitely not CPR, it's definitely not a ventilator. So "do everything" really has to be interpreted more broadly as "do everything that will benefit the patient."

DEBU TRIPATHY: I think it's important at the very beginning to lay out what the expectations might be. The way I initiate this with patients is to give them a spectrum of what we might expect from their situation, whether it involves new technology or new experimental therapies. And once you frame that, it becomes a lot easier to go back and allude to it. You might say, "Look, the worst case scenario is your cancer may be very resistant to everything we do, and things may deteriorate quickly. The best case scenario is that you have a great response to this treatment, and you have a great quality of life, and a very long remission. And, you know, my job is to guide you through this and try to give you the best advice that's going to get you on the best end of the spectrum. However, if we are on the bad end of the spectrum, we are going to turn our attention, turn our focus, to the kinds of things that will make a difference given the situation weÕre in."

I find that once we look at those boundaries, and I talk about the best and the worst, that not only have I given myself some space to walk into later on in the worst case scenario, but I've given them the hope of the best case scenario without misleading them because I've given the whole range. And, in fact, most human diseases, most chronic diseases, fall into a very large spectrum.

back to top

JUDY MARTIN: I'm Judy Martin, a physician as well. And I was thinking this morning and also this afternoon about the body. We're talking about autonomy and decisions that are sometimes in opposition to what the body is actually doing. I'm thinking of the pictures this morning, the pictures from the nursing home. Who exactly is this "I" that's saying, "I live too long," when the body is continuing to live? So I would like to hear some comments about communicating with the body, working with the body, or looking at the body's role in autonomy and decisions. Obviously, in many cases, the body has "decided" to continue living.

LAWRENCE SCHNEIDERMAN: Guy and I often come to some sort of conflict over what to do when you have a body without a mind. And I now think that we are going to have to compromise, to say that there is always going to be Guy's position and there's always going to be my position, and there's no way to resolve it. So let's be friends and say some hospitals will have policies that say, "We don't keep people alive who just have bodies and no minds and are permanently unconscious," and other hospitals who will say, "Well, we do." And so, in a sense, the mind-body problem, so to speak, is going to be resolved the way good old Americans do it, by compromise.

I don't know if that helps, but I do think that medicine is constantly examining this relationship between what we call our personhood, our capacity to interact, which philosophers say is the basis for moral decision-making, and the fact that we all lug around this flesh and bones that we can't escape--we can't be a person without that stuff.

GAIL GREEN: I just want to quote Yeats, "My soul fastened to this dying animal."

FRANK GONZALEZ-CRUSSI: I think that the medical profession is also responsible for the high and unwarranted expectations of the public. It's not just the media. The example that I often give to substantiate this claim is that the choice of terms favored by the medical profession is sometimes exaggerated. I think of the case of CPR, cardiopulmonary "resuscitation." They could have been more modest, they could have said something like "physiologic reactivation," but they were not happy with that. They wanted "resuscitation." It's bringing back the dead from the grave. It's not the physiological feat, it's the biblical feat of Lazarus.

back to top

My other comment is prompted by Professor Witmore who mentioned that recordings are artifacts of our own creation and they merely reflect our interest in death. I would say that everything that is stated about death is purely an artifact of our own creation. In other words, we not only do not know anything about death in an essential sense but cannot know anything. It is something we cannot know because it is outside of the realm of general experience, or if you want to put it in technical philosophical terms, it's not empathic but meta-empathic.

Dr. Tripathy was talking about how we have no role models. I mean, how can we talk about learning how to die or the "art of dying"--I think that was an expression that was used today--when there are no role models, there are no teachers, there are no professors. Again, what do you mean by the "art of dying," that you should develop some patience and some fortitude? Well, that's generally, you know, proven in life, but it is not specifically about the art of dying.

We heard Professor Micco talking about death as the cessation of electrical activity. Well, that's purely a practical experience. So we know that lawyers are not going to sue us for stopping supportive life measures. Is it the decision of other physiological parameters? There was a time, you know, when I was young and foolish--now I am no longer young--in which I really wanted to have an accurate and comprehensive definition. It's not a cessation of electrical activity, it's not the cessation of other physiological parameters, because even after a patient is dead you can take pieces of the aorta or grafts of the skin and they continue on living. So that's not the complete cessation of all physiological activity. It can be framed in mathematical terms, by current definitions of mathematical terms, but they are insufficient because they don't account for our own death. And, lastly, the life force that Dr. Micco also mentioned is too vague because it does not refer to our own individual deaths, which, after all, are the ones that count.

MICHAEL WITMORE: At the risk advancing the philosophical pursuit of the useless, I'm uncomfortable with the idea that because the experience of death is one that we have to interpret, one that is open to cultural influences, that it is on those grounds unknowable. We don't have to commit to an artifact/culture versus the body/nature model, but rather there might be some form of collaboration. I don't know how I would flesh that out. But it's that sense that it's utterly unknowable because it involves interpretation that seems foreign to me. It may be knowable precisely because it's cultural. And that's nothing to be optimistic about.

FRANK GONZALEZ-CRUSSI: That's what I mean; I'm going for certainty.

back to top

TOM COLE: I'm Tom Cole from the Institute for Medical Humanities. When I was listening to Guy's talk, I was remembering Jim's line this morning, "I could feel the difference, but I couldn't see it." So much of that wonderful series of photographs was an attempt to see it, help us see it. And I'm left still wondering when the hand says "7:41" in the foreground and in the background is the father. Is he dead? Just because that picture says 7:41 and we're supposed to think he's dead, do we know? So I don't think the uncertainty is removed about the issue of timing of death, the nature of death. The reason that Philippe Arias needed to help us see past historical eras and past artistic representations is that death is no thing; it loves to be represented, it has to be represented, and sometimes personified. Is it an archer? Is it a grim reaper? Is it a kindly nurse who puts you to sleep after your day's work is done, after your night's work is done? We need these cultural representations, and I think they are very important to us. Are they true? I don't know if they're true or not.

And the life force, to me, is an interesting attempt to go backwards, you know, 100 years, to the point where in the history of science people rejected that idea, saying it's not quantifiable. Say there is something useful in this idea that, like Jim, "I could feel something but I couldn't see it." Is it the life force? How will I know it when I see it? I mean, I think there's something to be pondered and worked on in that.

In terms of the literature of death and dying, since we don't have exact tests for determining death, people should be able to negotiate. As Linda Emmanuel suggested, why not let patients decide in relationship to their caregivers, which definition definitely applies to them. And that way we'll know when you are really dead, or at least the person who survives them will. I think it's, in a way, interesting and, in a way, terribly evasive and impossible.

In preparation for death I learned a whole lot this summer from a twenty-three-year-old man in Salt Lake City, who had a terrible case of Ewing Sarcoma and was a body donor. And so I interviewed him and video taped the interview for the film that I'll show you a little bit of tomorrow. The goal of my interviewing him was to get him to talk about his life and his illness, and to speak to medical students with the wisdom of facing his condition. I learned a lot from him: he was ready to die and he was ready to live. One eye was on God and one eye was on the ground. And when I said, "Talk to medical students who will be working on you. What would you say to them?" he responded, "Get your lives in order. Decide what you want to go to whom, and what really matters to you." This was a twenty-three-year-old man. I then asked him, "What about your prognosis and your future?" He planned to fight it right to the end. So preparation for death doesn't mean that we roll over and play dead before we need to die. It's a dichotomy that I think we often fall into.

When we were speaking about expecting the end of the narration to appear, or how do you know what your last thought is, or wanting to memorialize your last moment, it reminded me of a journal I was asked to comment on a couple of years ago by Claire Phillips, a social worker from Cleveland, who was dying of cancer. This was part of a Geratological Society meeting, and I kept turning the pages with a lot of anticipation, waiting to get to the end. Well, there was no end, it just stopped. And what I realized was that Ann Wyatt Brown, who put this panel together, had helped write the end of the story. Our comments on Claire's life and our relationship to her, befriending her and then mourning her loss, and her family's presence at the sessions, were part of the ending of the story. We don't finish our own stories.

back to top

GAIL GREEN: Her story is silence. I'm thinking of that scene in the Seventh Seal, where death comes for the character. He doesn't find death, but death finds him. "Now, will you tell me your secret?" he asks. And Death says, "I have no secret."

PATRICIA BENNER: Patricia Benner from UCSF School of Nursing. It occurs to me that in this day we keep crossing over between death as human passage and death as a medically mandatory physiological state. And it seems that we should try to open up the social spaces, look at death as the human passage, and figure out if we're using clinical language as a proxy for human passage. But the other term we haven't mentioned a lot is this notion of, "What is it to have a life?" And perhaps because we have trouble figuring out what it is to have a life, or live, that we won't be so good at talking about death as a human passage.

LAVERA CRAWLEY: Yes, I'm LaVera Crawley from Stanford Center for Biomedical Ethics. This is not really a completed thought but it struck me that Dr. Witmore's notion of the black box is really is one of the jewels to come from this conference. In the notion of recording versus understanding, or interpretation, I am reminded of the Egypt Air crash, and how we struggled over how we were going to make meaning out of what was stated on the black box and how we, as part of American culture, seemed to want ownership of being able to interpret the meaning, but, quite understandably, the Egyptians resisted that. How could we really understand what was being stated there?

LAWRENCE SCHNEIDERMAN: Is death a "human passage"--I think that was Benner's term--versus some physiological event? That's the problem. And if you say it's a human passage, Robert Beach is a philosopher who says, "We should say cerebral death." So when a person loses his cerebral cortex, that's death. But the only problem is then you say, "Oh, so I put this guy in a box who's still breathing and put him underground? No, that isn't death." So in a sense, we haven't solved that problem, what the difference is between a human passage and physiological death. That's the paradox, I think.

MICHAEL WITMORE: I think one of the interesting things about this topic is that it is difficult to talk about precisely because it links physiological fact and empirical problems to interpretive ones that we're just philosophically not equipped to parse. We tend to want to split them up. So it's no wonder that it's so troubling. It's hard for me to think of discounting your empirical account of death for one that was more philosophical or personal or narrative. It's hard to pull them apart.

back to top

PARTICIPANT: I would like to ask Dr. Tripathy if he has any comment on the recent controversy about the use of bone marrow transplantation for breast cancer patients. In the beginning, this seemed to be a viable alternative therapy, and the feminist community, in particular, was very gung ho about getting insurance authorization, and so on and so forth. And now there are studies saying that it isn't that effective, and that doctors and the feminist community made a mistake in pushing this so hard because they ignored certain medical evidence. I had a bone marrow transplant, though not breast cancer, at a time when it was considered an experimental therapy, and I had to fight my HMO for three years to get them to pay for it. And so whereas my sympathies are more with the position that if there's hope you should fund it, when do you make the ethical decision to say that this is a viable therapy versus a non-viable therapy, and really go to bat with the insurance companies over it?

DEBU TRIPATHY: Well, the whole bone marrow transplant story is an expose of over-optimism with technology and the very human tendency of wanting to fight for what one thinks is right. Right now, it appears as though bone marrow transplantation is not that beneficial in breast cancer, but there was a lot of excitement around the new technology. And I think that a lot of the impetus to push for it was, in fact, from the advocacy movement, as well as from physicians. They each had their own reasons for wanting to push it. It was, I think, an example of trying to put one's professional advancement ahead of what the clinical data showed. And for women who were supporting it, it was an expression of, "Society isn't doing enough for us, they're neglecting us and this is one way we're going to fight." In fact, in some states, laws were passed that required insurance companies to pay for bone marrow transplantation.

This was an example of the dissemination of technology outstripping our ability to study it scientifically. In most areas of cancer, we are going to have to do controlled clinical trials to determine the benefit of any of our therapies because our therapies aren't that good; they might incrementally improve outcome in a defined group of people, but we won't know unless we do clinical trials. So you raise an important issue: we have to deal with the emotionalism, as well as the science, in how we move technology ahead.

JOHN GILLIS: This is just a rumination, but it goes back to Tom Cole's point that death is not a thing, but it does seem to attract to itself more creative activity, particularly in the 1990s. I'm not saying that it doesn't deserve it, but the amount of creativity--artistic, scholarly, and even medical--around this seems to be worth commenting on. And I wonder, this goes back to the point that was made here, about the burden that death and dying puts on patients, as well as doctors. And it's a cultural burden, as well as everything else. I'm thinking here, today, we've heard about the various things that the dying and those around them are supposed to produce--wisdom, vision, oracular statements, heroic behavior. These are things that are pretty rare now in modern life, generally. In other words, I think we have to look at the absence of opportunity of these things in other areas of life, in order to explain why they're clustering now around death. And I would add to this, and this goes back to the point that I think has just been discussed, death is a mystery, it's an unknown. It attracts to it one of the great human characteristics, which is curiosity. So it's not surprising then that, the more we heighten the notion of the unknown, the more we should then be prepared for society's obsession around these issues.

And just one throwaway observation about this strange thing that's happened now in our culture, where we can conduct wars without inflicting death on ourselves. This is extraordinary--to my knowledge, a step unprecedented in human history. So now we're in a situation where death is domesticated more than ever before.

back to top

PARTICIPANT: Two comments about time and also the human aspect of what we're talking about. I often do bereavement groups, and when people are sitting in a circle telling their story about the person who died, I often feel as if the person who died is in the room. In the film that Dr. Micco showed us, we saw the transition that the dying woman was making, whatever it was. We can't scientifically ever know it, but each of us, individually, I would say, knows it on some level. And those people who have died live on in our lives in some way, through our memories or through our love.

I want to come back to these two questions of the morning about what do we want when we're dying. And I think for me the most meaningful thing would be to be with people who recognize in me an essence beyond my body. Although I want competent medical care if I'm in a situation where I could utilize medical care, I still want that recognition. And I think there's a way that reality does get transcended when we have that sense of our own timelessness and our own essence.

When working with people who are grieving, I think the conversation does go on; it goes on very powerfully. I think there's some kind of communication, some working out of relationships in some way.

PARTICIPANT: Just a thought, a comment. I was moved by several things that people have just said. But I'm thinking back to this morning and Sandra Gilbert's metaphor of death's door, and the very powerful way in which she described how a door does seem to be open between the person who has died and someone who was close to him or her, and there's a very strong feeling of pull or attraction. And that's not something I have ever heard anyone talk about so vividly and compellingly, but I recognize it. I have felt this is true, I have felt that. I think one of the reasons for--I'm guessing--that part of the obsessionality about when does death occur, when can we be sure it has occurred, when is it finally over, may have to do with our anxiety about that door being open, and a need that we have to close it, to draw a clear line between death and life, the person who is gone and ourselves who have survived--in part, because it's scary, it's frightening, it's attractive. And if we're going to continue to live, we do need at some point somewhere, somehow to close the door. And I think that funeral practices and rituals, and art-making, also, thinking back to Jim Goldberg's presentation, are ways of closing the door, but closing it gently.

back to top

SANDRA GILBERT: Thank you for what you said, because I need every kind of affirmation that I can get. I hear two absolutely different strains of thought here, and I just want to go back a little bit and note that on the one hand there is a whole medical group of people, who are talking about death in a very medically-specific, culturally Western way, and then there is another group of people talking about representations of death, and mourning practices, beliefs about death and about the other world. And maybe one way of bringing this together is to remind ourselves that we shouldn't be quite so Euro-centric or Western-centric as we're being, but think about cross-cultural death practices.

I do not mean that death is a cultural construct. Everything, supposedly, is a cultural construct, but death just isn't. However, responses to death are. And there are certain things that seem to persist cross-culturally in ways in which people respond to death, a sense that the dead are sometimes present, that there are openings into death, that the dead are either mournful or dangerous, or comforting, that the dead are somehow there on another side. I mean, there are cultures in which the dead are sent out with stones. There are cultures, on the other hand, where they are welcomed back in; I talked about some of that this morning. I wish there was some way that we could, in talking about seeing the difference, think, too, about cultural difference and think about the ways in which our own practices might be educated by the practices of other cultures.

TOM COLE: I want to try to offer some thoughts about the debate we've been having about death as a human passage versus death as a physiological fact, and whether there's a way of bridging the gap. I think I want to side with Michael Witmore and his discomfort with the formulation that just because we can't know death in any truly empirical way, that we don't take the images and intersubjective truths of our minds and our cultures seriously as a way of experiencing and understanding the death of others, or perhaps our own death. They're just not the same, the thing and the word. But it doesn't mean that we shouldn't take our words very seriously and our images very seriously. That's the part of what allows us to be human and continue to be human.

So I would say that one way of thinking about this dichotomy between death as a human passage or as a physiological event is to say that we should not look for universal abstract answers to a question like that. We should say who is dead, what's the situation, and for what purpose is the question being asked? Well, in the bereavement groups, it's very important for the survivors to be able to conceptualize, you know, caregivers to be able to think of things in human terms, I mean, experiential terms that are moderated by metaphor and language. But, in a cultural context and in medicine, it's also important to get the numbers right, so that if possible we can get the blood pressure up so that there could be oxygen to the brain, so that we can have the images.

GAIL GREEN: I'm a little concerned we've gone over the time, so, perhaps, probably we should continue the discussion tomorrow. I want to thank you all.

back to top