Session Three: Vision--Confronting the Margin

Patricia Benner, R.N., Ph.D.
Professor of Nursing, University of California, San Francisco

Comment

I'm really struck by and surprised by the conference. We came to speak of dying and death. We have been confronted with perhaps the hallmark of disengaged reasoning in the cadaver. Even in Tom Cole's attempt to reanimate the relationship between the donor who wanted to contribute to the community, and to science, and to better future lives, there is a way in which we can't overcome the very real symbol of disengaged reasoning and the body laid bare in the cadaver. Some of us talked a little bit last night about all the silences in the conference. And there is this silence of world and embodiment because to die is to lose one's human world. And none of us knows really what that's like for the one dying. But for those of us who are left, but have lost a world-defining, self-defining relationship with the one who dies--as Sandra Gilbert has so profoundly confronted us with in talking about the death of her husband--we have lost our world; our world will never, ever been the same.

So there's something really profound that I hope we can capture in our thinking together about our fascination with the clinical gaze and the cadaver, with the clinical entity of death, and death as a human passage. I didn't know this conference would take this turn, this dialogue between the Cartesian body and the socially sentient body that dwells in real, finite, risky worlds.

I was very moved by Jim Goldberg's picture of the bed and the chair, in the very last hours with his father. And I understand that chair as being symbolic of the capacity to dwell. Even when you're reduced to bed and chair. A longing to move, even from the bed to the chair as a last act, is really profound. And then the chair is empty and he cannot get his father to the chair. And that sounds like, smells like, feels like many deaths IÕve observed.

Instead of the metaphor being ocular-centric, I think it is more as Tolstoy would have us envision it, that it is about touch and smell and world. We are so oblivious to what constitutes us and what constitutes a world for us, and how dependent we all are on each other to hold open the world. And how hard it is when you're dying to have all your horizons cut short, and not to be able to imagine a future. That's so difficult that we escape from it and we--I say "we," I think of all the people that I've been with who were dying--keep trying to find a way to imagine a horizon just a little further open.

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This was another thing I was struck by in Jim's comments about Fran, the love object, the intimate stranger, the compassionate stranger, who comes in, in this free relationship to laugh and to joke and to pay attention to favorite drinks and positions and the very physical world in a way that sometimes family cannot do simply because they are losing their world. There is a bit of anger, there is a real tug of war of letting go, and we have this incredible cultural invention of the compassionate stranger, who would come and who would talk about ordinary things. For me, there is the case of Mr. Baker, whom I met when I was nineteen years old. I had known his wife very well, worked with her in the office, and here I was learning to be a nurse. And he said, "Well, because you're a nurse you can bear this." I was nineteen years old, give me a break! I thought, "How can I be with Mr. Baker, and I love Mrs. Baker." I knew I had nothing to offer. And it was in the early death awareness era, when we were not going to keep it a secret anymore. What Mr. Baker taught me was that he still liked his coffee really hot. He liked his bed where he could see the sunset. He wanted a flower where he could see it. He wished he could go home one more time. And he still liked a good joke. So there is this thing about what it is to have a world that we confront in facing death and being with the dying.

Sandra, what I learned from you is this profound love, in an honest raging against this stupid error that took Elliot from you. Kierkegaard's great vision of grieving is that when you lose a self-defining relationship, a world-holding-open relationship, you find a way to take up life and have the courage to engage in new risky commitments that might also die: you won't just imagine that the loved one is there with you, you will acknowledge that he is indeed dead. You will find a way to put your life together that honors that self-defining relationship but has the courage to risk loving again and maybe losing another world because dying is always about losing a world.

I have several grief stories I want to share and then we'll open for discussion. My goal is to revisit the way in which, when I say death is a human passage, I'm not talking about transition. I'm talking about the human passages like birth and marriage and divorce and losing your job, those kinds of human passages where one world passes away and you have to find your way around in a not-yet-understood world. And I've been, for the last eight years, studying Critical Care Units, where I've come to observe the makeshift rituals that people pick up from the fragments of whatever cultural conglomerations they can pull from our American culture. The following is a story of a retired man, his wife, family and grandchildren at the time of his death, and the rituals of reminiscing and narrative reflection of a life come through.

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The nurse in the case tells the story:

I received him from the regular unit about 3 o'clock in the afternoon, so I took care of him for about four hours that day. Then the next morning, when I came in to report, they had just intubated him. By the time I got out of report, they were setting up and putting basic lines in, and by 10:30 in the morning, he was being dialysized. So all of this happened in the space of about five hours. It really kind of overpowered this man, who was still quite with it. He knew everything that was going on, even though his liver enzymes were sky high. I really thought that he should have been encephalopathic by then, but he wasn't. And his family was all there, really kind, and kind of in more control than I think my family would be. But what happened through the day is that none of these interventions made any difference in his lab work, none of it made any difference in his clinical picture. He continued to deteriorate, and after being on dialysis for four hours and not having that make any difference at all, his wife and family said, "ItÕs time to stop." At that point, this was the first time I had ever said this to a patient. I said, "YouÕre going to be taken off dialysis and youÕre probably going to die within a couple of hours." There is an awesomeness of saying that to someone. I knew he could hear me, he responded to me. And his eyes just kind of popped open, and then this peaceful look came over his face. It was an amazing transition.

Second nurse: Did you really know he was going to die in a couple hours?

First Nurse: Yes.

And I must say we seldom really know this, but this was one of those moments.

Second Nurse: Medically, it wasn't intuition?

First Nurse: It was not intuition, he had total body failure. It was the first time I had ever been able to say that to a patient. I had only met him the night before, but it seemed like we had connected in some way. It felt like there was--I donÕt want to say a relationship, that sounds much too deep--a rapport, a connection.

And it's this kind of connection that the intimate stranger can have, as one who can be in common humanity with someone who is dying, who goes home to an intact world. That's an amazing cultural invention; let's not downsize that too far.

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First Nurse: Something between him and me. But this was a case that was obvious, it was clear. One thing I did want to say about that whole situation is that I felt very possessive about him, about everything that was going on with him. He was a one-to-one patient. I didn't have to deal with any other patients in the whole unit, and I didn't.

Third Nurse: I remember that day. You sure didn't. We didn't see you. You ran your legs off the entire day.

First Nurse: But I wanted it that way, I didn't want any other nurses in there with me, I wanted to deal with Dr. S and J and T, who was in there doing the dialysis.

Interviewer: When this situation changed and he was now dying, did you do anything in terms of managing the environment?

First Nurse: I felt a great urgency to get all the peripheral junk out of the room, as many machines as possible. It had been noisy in the room all day, and I wanted to try to get the noise level down. Get some chairs in there, just different accoutrements in the room. Instead of having all this technical equipment in there, just to get rid of all that as much as possible, leaving just one IV pole to pump the ventilator, and kind of hiding the arterial and pulmonary lines. And then setting the room up with some chairs, and making sure there were several strategically placed boxes of Kleenex, and his water pitcher, and several glasses. All his family was there--his grandchildren were there, everybody was in the room, it was nice. We were off in one of the corner rooms, where we could close the door and nobody needed to bother us for anything. And I would leave the family for about, say, half-hour periods and just kind of keep my ear out for what was going on, and keep an eye on the monitor. I'd go back occasionally to see how everybody was doing. After, say, about two hours, the family started talking about him, not quite in the past, but, "Oh, you know what we did last year? It was really fun." Starting to reminisce a little bit and maybe work through some of their grief.

He finally died about 6:30 in the evening. To have been with him all through that really very critical period, making sure that he knew everything that was going on, making sure that his family knew what was going on during that critical period, and to help him into the most peaceful death that could happen under those circumstances, gave me a feeling that I had really helped in that situation.

Well, I think that's a good contrast between death as a clinical event and death as human passage. And maybe it is the task of the humanities to open up the social sentient spaces as human passage.

I want to contrast that with just one really brief situation, because it picks up the thread that we were following yesterday: how much consciousness do we want in facing our demise? Do we really want to know? How much do we want to know? This nurse seemed to be attuned.

In that situation, this person really did want to know, and it would have been a kind of theft not to convey that. In this situation, with a different patient, a different nurse, a nurse says, "I was standing at the bedside the whole time and he started having trouble breathing. And I was just cradling his head. And it is not my practice to lie to patients. On the other hand, to me this was just trying to get him through it." She refers to the calming and reassuring phrases that she was using.

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But obviously he was having trouble breathing. The color was terrible around his face, except he kept going in and out of consciousness. My main task at that point was--I wasn't having to push meds or do anything else, or talk about the patient--I just sat there and held his head and held his hand, and talked to him until he wasn't hearing anymore. I just sat there and he ultimately died. I remembered thinking I should have gloves on. But it's terrible for someone who needs comfort so badly, and to have somebody who has gloves on hold his head with gloves. I just remember thinking that my most important task at that point was to hold onto him because no one else could do it. He was so awake and gasping for breath, he needed someone to comfort him.

But she felt conflicted because the situation was moving so fast, she was having to respond with comfort. And this kind of story always reminds me of how difficult it is in ethics when we only have a language of justification, we only have a language of decisional ethics, and we have very little language for action, for being with, for relationship.

From a contractual vision of meeting autonomous strangers, we do not think of ourselves as being constituted by others, and tend to think of the moral self as that which is owned by the self and freely chosen. Care, connectedness, responsiveness and interdependence are signs of a moral lapse and are sources of embarrassment for the strictly autonomous atomistic vision of the individual, of this individual who is this self-possessed. For the autonomous choice-maker, care and caring practices can seem as yet one more set of choices until the position of caring and needing care intrude because care always implies situated or bounded choice. I mean, it is bizarre that much of the language of death and dying is so colonized by choice language, as if it is a choice or we're really ever able to confront it as a choice.

In intimate spheres, loving a child or a parent, such relationships preclude freely choosing to stop caring about the parent or the child, though one may physically separate from the other. In less intimate spheres, when one is vulnerable or incapacitated, choices about being cared for and receptivity to care are constrained. Care, publicly and privately, are bound up with the human condition. The thing that I would like to bring to the conversation, as a nurse, is the way in which our care both holds open and closes down worlds. Now that morbidity is expensive and mortality is cheap, there is a new ethical landscape in which we discuss death and dying. I think we need the humanities to help open up for us death as human passage and our ongoing social responsibility for constituting livable worlds for those with whom we live and with whom we might face death.

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