Session Three: Vision--Confronting the Margin
Panel Chair's Introduction

LaVera Crawley
Stanford University Center for Biomedical Ethics

When I asked Tina Gillis what she envisioned in that topic and what she had in mind for us, she said she was interested in what we see when we're looking at that particular place, at the margin. She did not say what is the proper preposition to follow that--the margin within or between life and death.

As I tried to make meaning of that for myself, I thought about a case in an ethnography that I conducted on end of life issues, where we followed patients who were seriously ill with terminal disease or serious and complex illness where death was a possibility. And one patient came to mind whom I enrolled in my study, a young man with leukemia, who had a very poor prognosis at the time that I met him. He enrolled in the study, but unfortunately, even before I had the chance to do the in-depth interview with him, he died. Hence my first real deep visual enounter with him happened on the autopsy table. That was my first real intimate connection with him.

Although two of our speakers today, Tom Cole and Frank Gonzalez-Crussi, will be talking about encounters with the dead body, this is not the only reason this case comes to mind for me. What really brought that case to mind for me was the interview I conducted a year later with his mother, in which she struck me with the curious notion that even though she knew her son's diagnosis from the beginning and she was well aware of his prognosis, particularly as he got sicker and sicker and was failing chemotherapy, she said that she was completely, completely surprised when he died. And I couldn't reconcile this: "Well, if she knew his diagnosis-prognosis, why was she surprised?" I went back to look at the text last night to refresh my memory about this and make sure I had it right. Her response was that she was surprised "because he never looked like someone who was dying." The visual cues for her were never there. So I think that's how I have personally interpreted what Tina Gillis had in mind for today's topic, "Vision: Confronting the Margin."

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