Stories Matter

The Role of Narrative in Medical Ethics

Rita Charon, Martha Montello, Rita Charon, Martha Montello

• Publisher: Routledge
• Year: 2004
• ISBN:
  9781135957261
• Edition: 1
• Topic: Medicina
• Subtopic: Etica in medicina

First published in 2002. The doctor patient relationship starts with a story. Doctors' notes, a patient's chart, the recommendations of ethics committees and insurance justifications all hinge on written and verbal narrative interaction. The practice of narrative profoundly affects decision making, patient health and treatment and the everyday practice of medicine. In this edited collection, the contributors provide conceptual foundations, practical guidelines and theoretical considerations central to the practice of narrative ethics.

PART I
NARRATIVE KNOWLEDGE

CHAPTER 1 NARRATIVES OF HUMAN PLIGHT: A CONVERSATION WITH JEROME BRUNER

JEROME BRUNER

Professor Jerome Bruner met with Stories Matter editor (RC) in March 2001 for a conversation about the role of narrative knowledge and practice in medicine and ethics. Professor Bruner introduced the concepts of narrative knowledge to us all in his seminal studies Actual Minds, Possible Worlds and Acts of Meaning.¹ His formulations of the structure and function of narratives have revolutionized cognitive psychology and the teaching of law, among many other fields. His new book Making Stories: Law, Literature, Life discovers how our deepest notions of the self are organized and enacted narratively.² Here he speaks about the unity and the meaning of ordinary living achievable through narrative acts, and he suggests narrative means by which bioethicists can improve their practice.

RC: Medicine and bioethics have followed psychology and law and so many other fields in coming around to respecting the power of narrative and trying to understand how it works in our lives. We have begun to examine how narrative competence might help to make our work with sick and dying people more humanistic and more ethically discerning. Help us understand what narrative knowledge is and why we need to know about it.

JB: However specialized the culture, the fact remains that, whatever the specialized job you do, whether it’s riveting bolts or taking care of people on death row, there’s some kind of underlying thing that gives a kind of unity and sympathy and possibility for the human condition continuing. You’re constantly in the process of making narratives. You meet some guy, he said this and did that, and so on. We’re always trying to control them by making them sound as if they’re something other than narratives. I laugh when people say, “Those are just stories, just narrative, let’s get the facts!” We live by stories, and they’re what give sense to our lives. We’re such biosocial creatures anyway that they may be part of what gives us our biology. They give us a lot of the biology having to do with health. Of course, you have to figure out something about the dosage—you can’t give too much! The dehumanizing process first gets expressed as people being rational—I’m not rational about the people I love or hate! I don’t have to justify my loyalty to narrative, I just want to let it come into work, not because of the fact that it’s self-indulgent on my part, but because human society cannot run without it. And I feel very strongly that rather than talking about stories as old wives’ tales, we had better look technically at what on earth they do.

RC: How do we live by stories, and how do stories confer unity?

JB: Telling stories is an astonishing thing. We are a species whose main purpose is to tell each other about the expected and the surprises that upset the expected, and we do that through the stories we tell. In my early studies, to go way back, I was interested in perception and selectivity. We’re constantly scanning the world selectively in order to minimize surprise but also to find the kind of thing we’re looking for. Now, it was physiologist and Nobelist Lord Adrian who first got me off on this kind of thing. He said, you know, the thing that’s so interesting about the reticular system is that it goes “Boom!” when something violates expectancy, and what it does is to clear all the residual and vagrant impulses in the cortex so that by the time the surprising message gets there, it can be heard.

I suppose stories are analogous to the reticular system. We start out with some sort of canonical expectancies of what the world is like, how things are going to be, and then all of a sudden things happen differently; you have what Aristotle referred to as the peripeteia. Something knocks expectancy galley west, off course; all of a sudden, you get cancer, your wife leaves you, or your accountant calls to say that the market dropped like mad during the night and you have no money left. There’s the peripeteia, and then you try to cope with the peripeteia and to restore a new legitimacy and expectancy in life. Now what’s striking about the new kind of legitimacy on the medical side is that usually, as narrowly defined, the upset of expectancy is, “I’ve got news for you, you’re on the brink of death.” The ordinary canonicity is that you’ll go on living forever, and now somebody tells you it’s finite and you’re going to be dead.

RC: And what helps people restore legitimacy after these upsets?

JB: We deal with these upsets—we begin to form a style. We talk about someone—say, Bill; he never panics, he always thinks about how this might have been, what he would do—and we say that’s how he is himself. So the great thing is that when people come to this stage of being patients, when they come to the likes of you at the hospital and you have to tell them some hard news that you don’t know if they’ll make it or not, the person wants to deal with it in some way that has some stylistic integrity about it. That is to say, that’s true to them, that’s true to the people they love, what the people expect of them. I was thinking of something from Rainer Maria Rilke, “A Death of Your Own.” Do you know that piece? It’s fantastic, it’s about this old man who’s having a death of his own. It’s real Rilke: it destroys your sleep for three nights afterward. It has to do with death, but it has to do with other things, such as the important turning points in your life. You want somehow to relate your death to what you think of as your itinerary, that your death is going to be like your life in some way. Your death is going to be like your life, the two are going to be of a piece.

RC: Some of us in bioethics have begun to conceptualize our narrative work as trying to do exactly that—helping people to answer the question “In the face of this life, what constitutes a good death?” Can relative strangers help a person to do that?

JB. Well, it’s a funny thing. I’ll tell you one experience that didn’t have to do with death but with blindness for me. I was born blind because of cataracts. Fortunately, they were not opaque, so the light got to my retina. My cataracts were removed by a brilliant surgeon. So I got that done, and well. I’ve even won a few minor squash championships in my time. I went to the Eye Institute at the Columbia-Presbyterian Medical Center in 1950, because I noticed that a secondary membrane was growing into the place where the lens had been taken out. And I went to a renowned doctor named Doctor Drake, who had a big reputation. I went to him. He said, “It’s going to be a bit tricky because we have to go far back on your eyeball.” My postoperative eyes were covered up for two days. I couldn’t tell whether I could see or not. But at the Eye Institute I had a nurse who sensed my anxiety about “Am I blind or am I not blind?” She came in and said to me, “Hi there, blindfold! How are you doing?” I loved that; it was a recognition that I feared I might be blind and not just blindfolded. Her sharing mattered. This was just an ordinary thirty-five- year-old Irish-American nurse. I recall saying to myself, “If she can do it this way on the fly, what’s the matter with the rest of us? Can’t the rest of us do it too? ”

RC: What is the “it” that she did for you?

JB: She recognized my human plight and shared it with me. There are plights having to do with death, having to do with love, having to do with power, with wanting to help someone you can’t help. Until you get into one of those plights you don’t know what torture is. My nurse recognized the fact that I was not just a “patient,” I was somebody with plights, a human being. Plights are everywhere, but the important thing is to pick your plight, be true to coping with it. And not just this particular plight, but you go back again over the class of plights that you have lived with and how you make what you’re doing now somehow consistent with a style. There’s that wonderful Henry James story about that narrator with his plight of the beast in the jungle, his impenetrable blindness, and then the woman who is in a sense complicit in looking at the thing like that.

RC: May Bartram recognizes Marcher’s plight, all right, but it isn’t a plight you’d want to be left in, and she isn’t able to penetrate his blockhead to let him recognize it. Aren’t there plights, like Marcher’s, that you don’t want to be true to but rather free from?

JB: Yes, and the freedom usually comes from someone else’s recognition. I’ve had some personal experience with kids, for example, who’ve been in one of those car crashes that shouldn’t happen to anybody, and who have survived only because they’ve got soft bones and youth. Let me tell you that story— right from the start. It starts a few years before I began working with these kids. I was out skiing in Aspen over a Christmas holiday, going easily down the hill. The top crust broke, and I went through, and my knee broke. They finally operated, and I had to do a lot of exercises to recover. Rita, you won’t believe this. When you went to do your exercises, they put you into a curtained cell, a nice little cell with linen curtains. You did your exercises alone. It was pretty grim and hard to do. And it was like that for long months of treatment.

Now, let me go back to the kids. Soon after this accident, about two or three months after the operation and the exercises, I sailed my sailboat across the Atlantic. One’s pretty immobilized on a sailboat. When I got to the other side (I was on my way to Oxford), I discovered I couldn’t move my leg—it was all bound up at the knee. I went to the orthopedics department at the university and they said, “Come up and take a remedial class with us.” Classes? Hmm. What did I discover? They had a whole little gang together, some of these injured kids included. So I would get through my exercises right out there in the open, on the floor of the gym, and then I’d watch the kids. And the nurses would come up to a kid and say, “You couldn’t have done that a week ago. That’s fantastic!” And soon I got to talking with and working with the kids, mostly by telling stories about their progress and how they’d be next week.

So I got to thinking. You set up a local culture, and people cheerfully do hand-springs to fit into it. Local cultures are compelling! To me, a culture trades in canonical narrative. Which is, in that case among those kids, we all had a lousy piece of luck. You banged your head, I knocked off my arm. We can manage. Cheryl Mattingly at occupational medicine or occupational science at the University of Southern California recognizes that physical Injury is a thing that’s best described by narrative because it comes down to a peripeteia and how one copes with it narratively and really. They have some kids, for example, who do bear-chasing exercises, some working against the clock, and some imaginatively rowing across an imaginary channel.

RC: And so your plight was joined to the plights of these kids?

JB: I got through my exercises so fast it would take your breath away. I started dreaming up things I could do to help them with their stuff. Especially games we could play, games they liked and could identify with. They loved it; so did I.

RC: Well, isn’t that an enactment of the kind of interpersonal commitment you write about in Making Stories?

JB: There is a puzzle in all of this. The main thing that made, and makes, human culture possible is that you feel a commitment to it and, at the same time, maintain a certain autonomy from it. Commitment works because we’re able to sense each other’s feelings and beliefs—we are intersubjective to a degree: not only that you do certain things but I know your intentions, and you know mine. It is in this deep sense that no man is an island. And your very self depends on this intersubjectivity.

In Making Stories, I reviewed the literature on how people characterize the self. What I found is that selfhood rests upon a good story, a plot with Self as the agent that heads somewhere and gives continuity. These self-creating narratives are often modeled on classics or prototypical cultural forms. So we manage to maintain a certain autonomy while at the same time adhering to cultural forms. It is a little miracle.

The real thing is that in a culture, life is made possible by friends and close others, and not just by abstract forces. It’s the small communities we join or form and the commitments we make to them that shape us. At the start of adolescence, for example, just breaking into adulthood, my pals and I formed the Demon Crew. We souped up outboard engines, stuck them on the back of cockle-shell hulls, and raced them. We even entered the Around Manhattan Race, and, incredibly, our boat won it in Class C. And there was even a picture of Lenny, one of our gang, who had actually driven the boat, in a Mobil Oil ad in a yachting magazine the next winter! Funny how that sort of thing provides a template for subsequent stories. They have enormous metaphoric reach in life.

RC: It’s the plots about ourselves and the metaphors we use in telling them that let us see where we are going, or even choose where we are going.

JB: That’s what I mean about finding a way.

RC: If the self is a series of stories…

JB: certainly a library of stories…

RC: …can we learn to recognize the stories of others?

JB: If we hadn’t been able to, we never would have made it as a...