Session One: Silence, Art and Ritual

Jodi Halpern, M.D., Ph.D.
Joint Medical Program, University of California, Berkeley & San Francisco

Comment

Tina [Gillis, Project Director] suggested that I prepare about fifteen minutes of my own ideas on the topic, and then see how I could collect other people's thoughts together. But the truth is, I'm going to scrap everything I was going to say and just try to be completely spontaneous in terms of the kind of questions that I think these wonderful talks this morning have raised.

What I'd like to do is ask each of us here to think about two difficult questions. I'll say some things that I think integrate with these questions, and then maybe in the discussion, those questions, as well as many others, will come up.

The first question that the talks made me wonder about--and really, I have no answer to either of these questions--is: What do the dying need from others in the way of recognition; what form of recognition do the dying need? And the way to make the question really tough--for me, anyway--is to ask, in imagining my own dying, what would I want from others? Imagining the death of someone I love is not hard to imagine. Most of us here already are in a sense at the age of grief, where we've lost someone, and, of course, the talks today are very much about that. What do I think my loved ones would consider a fitting and appropriate recognition of their dying? I'm not talking about food, clothing, or shelter, not these things. And, specifically, I want to ask, do we want and need to be seen? That was the first thing, to be seen. A lot of my work is on trauma, on people talking about recovering and regenerating a sense of self in the face of the loss of self and trauma. Primo Levi, speaking about the Holocaust, talks about a dream in which the most shaming and awful part of the experience, in the dream, is that the self he had become was not seen, that the survivor is unrecognized. And we know in the hospital, the dying patients are often ignored on medical rounds, not seen--people spend less time with people who are dying. We know that this whole conference, in a way, is motivated by a long tradition of covering up and not looking at death and dying.

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There's a lot of literature in which people talk in terms of dying, in general, and then, in the trauma literature, about the need to be seen. But I would suggest to you that this is very controversial. And I'm not saying that we don't need photography because I'm incredibly moved by the role of photography. But photography is an art form; that's the point. And I would suggest, controversially, that we don't really want or need, necessarily--and I know people may disagree with this--just to be seen in the most objective sense, to be photographed in that sense, or to be visually, from a bird's-eye view, seen in the state of our most utter helplessness and suffering. And I think that Jim's work very richly addresses that ambivalence about being seen. I thought it was very important when he showed us the woman who said to him, "I'd like to see a picture of you close-up when you're 76," suggesting that there's a shame in being seen in a certain way. Of course, most of his pictures are not, including that one, close-ups; they are depictions, presentations, and the use of language is beautiful there, of subjectivity in a person. So they're not just, in any sense, a kind of bird's-eye objective picture of dying and death.

But the survivor literature in trauma, especially the Holocaust survivor literature, often makes it sound as if what people want is that other people see what happened. I think when we're thinking about dying, that's a major question for us: Do we want people to see? Do we want them to see us at the moments that we tend to look away? And do we want our loved ones to see?

Sandra's very beautiful and very sad description of what is clearly a very traumatic moment, "a body I had loved turned into a dead thing," presents another reason why I would say that there are things to be seen, but not necessarily just what is unmediated by art. So we have a triad: art, mediation and seeing.

Do we want to be heard? What is it that we want to be heard? I think there's a real ambivalence about talking when people are dying. I'm just finishing my first book, on empathy in medicine and doctor-patient communication. I'm really addressing empathy in terms of physicians though other people here, like Patricia Benner, have explored it in nursing, social work and other areas. In writing my book, I came to realize that the cases that I picked were all people who got furious at me for trying to hear and communicate verbally with them at a time where they were dying. I can't do a whole case in the time I have here, but my book is really focused on a woman who was refusing treatment. She was a diabetic woman in her early 50s, who had come to the hospital for her second above-the-knee amputation from vascular disease. And she had gone through the surgery, a planned surgery, and she had done fine before, after such a surgery, but she would now be wheelchair-dependent. That was known when she came in. But suddenly, in the hospital after the surgery, she stopped communicating. No amount of morphine would alleviate her pain, and she said that she wanted to stop dialysis and to die. And the whole treatment team had all sorts of reactions to it.

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I was in my very first week of training as a psychiatry resident, completely green, and everybody else was frantic--a medical ethicist, a surgeon, an internist, a psychiatry attending--and she told everybody, "I know that without dialysis I will die, but I don't want to live my life. I've decided I don't want to live a life in a wheelchair. I don't want to be living a life where I'll be on dialysis three days a week. I just don't want to go on; I'm having too much pain." Then, because I had suspicions, I said, "Is there anything besides your body that's hurting you?" And she wound up telling me that her husband of twenty-five years had told her while she was in the hospital that he was leaving her, that he could never live with anyone as disfigured as she was. And she started to cry as she told me about it. And then she turned to me--and my whole career for the past ten years has been influenced by this experience--she basically started to yell at me, really yell at me, so that I thought she was going to throw something. I was worried she would just hurt herself because she was so upset. And she said, "You're asking me to talk about this is the cruelest thing that anyone has ever done to me. Get out of here!" And she continued to scream, "Get out of here!" And this is after I had built up a rapport, where she had been more comfortable with me than anybody else on the team.

And I went out of the room, and a lot of other things happened. Unfortunately, the medical ethicist and psychiatrist and surgeon and internist all agreed that she knew the risks and benefits of treatment and non-treatment, and had the right to make the decision that she was in too much pain from her post-surgery pain, and wasn't going to have dialysis. And they basically turned up the morphine and she died. I never got to talk with her again.

This was an extremely influential experience for me. But one of the things that I have thought about, subsequently, is her saying that making her think and talk about this was the cruelest thing anyone had ever done. Now after dealing with many other cases, I'm convinced that that's usually the beginning of a therapeutic alliance. In other words, I think she was furious at her husband, for an obviously good reason. I don't think she felt willing to tell anybody what was going on. And I think there was the potential, if I had been able to see her more, that something would have happened. But she really did say to me, "Why do I have to think about this before I die? Why do I have to get into my head? Why do I have to have a conversation?"

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So that's the first set of questions, and they have to do with the issue: What do we want? And I would suggest we do need a kind of acknowledgment. When we imagine our own dying, there is something we want. We want some form of acknowledgment, some form of recognition. You've seen, in both Jim and Sandra's work, some modeling of what that acknowledgment and recognition using art might involve. And so I'm hoping we can talk about that.

The second question that I hope we can talk about was really posed by Sandra's very important observation that in the literary examples it's the dead who mourn and grieve the most. Now, that is really interesting. Why is it the dead who do the mourning and grieving in the most exquisite and intense way? My connection with that, again, came from the work I've done on trauma. I want to cite philosopher Susan Bryson, who survived a rape and a near-death assault. She describes how rape survivors, who have tremendous difficulty recovering a sense of self in the face of trauma, can't empathize with themselves, but then sometimes in groups, in survivor groups, they can listen to the narrative story of someone else in the group and empathize with that person and, therefore, begin to empathize with themselves. So Bryson writes:

The fact that survivors gain the ability to reconnect with their former selves by empathizing with others who have experienced similar traumas, suggests that we can exist only and primarily in connection with others. It also suggests that healing from trauma takes place through a kind of splitting off of the traumatized self, with which one then is able to empathize, just as one empathizes with others. The loss of a trauma survivor's former self is typically described by analogy to the loss of a beloved other. And yet in grieving for a dying other or a dead other, one often says, "It is as though a part of myself has died." It is not clear whether this circular comparison is a case of language failing, or, on the contrary, revealing a deep truth about selfhood and connectedness, but the essential point is that by finding some aspects of one's lost self in another person, one can manage to a greater or lesser degree to reconnect with it, and to reintegrate one's various selves into a coherent personality.

In thinking about why it is that we, in a certain sense, project our grieving onto the dead, it seems very important that we think about this lack of direct access to the experience of loss, and the need to mediate loss indirectly through our empathic connections with others. And, actually, the quote I just read you by Susan Bryson, to me, parallels in its logic Sandra's quote, which is, "If those who have died are still part of us, then death is part of us too." Then we can somehow mediate in our ongoing selves that unselving, that primarily unselving experience of death.

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So in thinking about what we need, I've suggested not just to be seen, not just to be heard--we're ambivalent about those things--but there is this kind of acknowledgment that art talks about. I think it's extremely interesting to think about the tradition of embalming, and how important it is for people to be seen as beautiful in some way. It's easy to be critical of that, but it's also very interesting to think about how different it is to need to have the dead do our mourning, in which case we really are using our fantasy, our imagination of connection with the dead, as a way of empathizing, rather than starkly seeing our loss. Of course, we may not always love the dead, but I'm suggesting that that bestowal of meaning, through projection, through empathy, allows us to take something back in. In a sense that is not necessarily a beautification, but it is an aesthetic and emotional transformation, rather than a stark recognition. And so, is it that different or that hard to understand why the American public, in general, need to see an embalmed face restored, a disfigured face restored? I mean, it's very interesting to think about the meaning of that kind of restoration.

One last thought connecting all this that also comes from this question of putting a face on death and recognition and empathy. This was prompted by Jim's slide from his first book, where the woman has lost so much, but says, "I still have my dreams." The question I'm still trying to address is what do the dead, the dying need acknowledged? "I still have my dreams," she wants people to know, "I still have my dreams."

So regarding this whole issue of realism, of stark reality versus art, of art that beautifies, and in a sense both "embalms" and beautifies, is this all that we're doing here today? I mean, what do we do with art? Are we covering up? Are we emphasizing? Are we making a connection? One thought I had about this is that people talk about the loss of a narrative of self. But I think I would shift the terms to say that what we're trying to do with art here, today, is to narrate a loss of self. And there's still a narration involved, there's still a story.

Ultimately, despite all our metaphors, and despite the fact that we describe in the literary imagination the dead grieving and calling us back, I would say that dying ends a conversation; and sometimes, just as soon as people know they're dying, they want to end the conversation. And there is a way in which we never do hear back something very critical--whatever we do know or hear or think about--we never hear their response to that. Nothing new can happen from them in regard to how we've dealt with their death. We never get feedback.

And so I want to suggest that the kind of acknowledgment that's needed is an acknowledgment that holds somehow to the meaning. As Jim's work shows, it's not his father's death, it's the meaning of his father's living and dying that continues on. And through art we do hold on to the meaning of people, which is very different from having an ongoing conversation with them.

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