Last Acts : Discovering Possibility and Opportunity at the End of Life
Last Acts : Discovering Possibility and Opportunity at the End of Life
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Author(s): Casarett, David J.
Casarett, David
Casarett, David J.
Casarett,, David J.
ISBN No.: 9781416580379
Pages: 368
Year: 201001
Format: Trade Cloth (Hard Cover)
Price: $ 35.88
Status: Out Of Print

INTRODUCTION Sylvester Sylvester It was when I was finishing rounds in my hospital late one evening that I first began to think about how my patients should spend their time when that time was cruelly limited. I''d just spent what felt like hours trying unsuccessfully to wrap up a difficult conversation with Sylvester, an older man who had a particularly vicious form of renal cancer. That his cancer was so extensive when it was discovered was due at least in part to a colleague''s talent for inventing benign explanations for the increasingly numerous symptoms that Sylvester brought to clinic every month. My colleague dismissed Sylvester''s symptoms first as "nerves" and later as "old age" until they were explained, finally, by the cancer that would kill him. This was the second time that Sylvester and I had met, and again our conversation quickly descended into a protracted and dispiriting review of Sylvester''s treatment options, which were limited, and the chance of success with each, which was essentially zero. We had been talking for well over an hour about his cancer, possible treatments, and even experimental protocols for which he wouldn''t have been eligible anyway. The conversation had become like a juggling act in which clubs were replaced by phrases--"quality of life," "comfort care," "aggressive treatment"--that he and I tossed back and forth until, for me at least, they had lost their meaning. In fact, I''m not sure these terms ever had much meaning for Sylvester.


His mind was clearly elsewhere, and that night, just as he had during our first visit, he kept circling back to his missed diagnosis with a predictability that was becoming disheartening. It had grown dark outside his hospital room, which was itself lit only by a pale, flickering fluorescent tube on the wall just above Sylvester''s head. The hospital ward had grown quiet, and even the shouts and metallic hammering of the construction site across 38th Street had been replaced by an eerie silence. And any remaining hope I had for a resolution to our discussion disappeared as I realized that Sylvester, who was Italian, began to lose his already tenuous grasp on English grammar and pronunciation as he became more emotional. He was working himself into a fit over his mistreatment, and our discussion swirled around and around, propelled by language that bore a diminishing resemblance to English. Finally, though, despite many misunderstandings, we seemed to be making progress across a river of circular arguments and recriminations. But just when I thought we had succeeded in hauling each other out of the other side, Sylvester stopped me with a question that sent us right back to where we started: "What I do now?" I shrugged--what choice did I have?--and waded back into a discussion of treatment options. But he stopped me again, in English that was suddenly so clear it was hard to imagine our past hour of missed communication and said, "No.


No, I mean, I have no time left. What I do?" I wish I could say that this question--the most significant one he had asked me in our short but intense relationship--led to a meaningful discussion and let us connect as we hadn''t before. But no, I dodged it. Just as most doctors would, I think. How should Sylvester spend the rest of his life? What sort of a question is that for a physician? He should ask his wife, perhaps, or their children. Or his priest. Or maybe this question was something he just needed to work out for himself. But I was stunned that he would ask me.


I was also reluctant to answer because I was, suddenly, in new territory for which I didn''t have a map. And that is anxiety-provoking for any physician, and particularly for one who was as young as I was then. I thought I would say the wrong thing, and that I might tell Sylvester what he didn''t want to hear. Or worse, that I would give him advice--the wrong advice--that he would accept. Mostly, though, I think I was reluctant to offer an answer because Sylvester''s question was so intensely personal. An answer, if I''d been prepared to offer one, would have implied a rich appreciation of his life that I didn''t have, and indeed would never have. And his question seemed to imply that he wanted to establish the relationship that my answer would require. It was almost as if he were saying, "OK, it''s so easy for you to talk to me with rehearsed answers about treatment.


Here''s a question that will force you to talk with me." It created a forced, importuning intimacy that I wasn''t comfortable accepting, and an intimacy for which I hadn''t yet mastered the physician''s dubious skill of avoiding gracefully. I''m not sure what I told Sylvester that night: "Whatever you want," or maybe "Whatever you think is most important to you." I don''t know what advice I offered, if I offered any at all, but it was probably as thin and weak as the hospital vending-machine coffee he used to complain about. I do know, though, that his question evaporated as I left the hospital and walked down an empty Market Street that night in time to catch the last train home. Last Acts But ideas--at least important ones--are persistent. They may disappear, leaving you alone for a while, but they eventually come back again, and again, until you pay attention to them. This is fortunate, because I suspect that most of us can''t be trusted to recognize an important idea the first time it comes calling.


I wish I could point to an epiphany of my own that led me to return to Sylvester''s question with the intensity that would make a book worthwhile. That would make for a convincing story, but unfortunately it''s not true. The truth, as far as I can discern it, is that this book is the product of an endless series of nudges, increasing in frequency and intensity, which have propelled me from that evening visit to Sylvester''s hospital room to this book. That his question stayed with me is due largely to my patients. I''m a palliative-care physician, and so most of my patients are near the end of life. Many have several months to live but some, when I meet them, only have a few days or hours. And all of them, no matter how little time they have left, and no matter what their background, have answered Sylvester''s question in their own ways. A few, as Sylvester did, have made the mistake of asking me for advice.


But most, fortunately, seem to know better and turn elsewhere. Still, I heard Sylvester''s question, or variants of it, often enough that I gradually began to pay attention. And once I did, I began to see Sylvester''s question everywhere. In the multiple tragedies of September 11, 2001, for instance. And the Sago mining disaster, and the sinking of the Russian submarine Kursk. All of these events and many more have forced a wide variety of people to recognize, often with tragic suddenness, that they have very little time left. Some--the fortunate ones, perhaps--have a chance to ask the same question that Sylvester asked me: "What should I do with the time I have left?" And a few--the very lucky few--have time to find an answer and to act. The result, for these victims of tragedies and for my patients, is the last acts that fill whatever time they have.


Some last acts are so small as to be barely noticeable, and vanish into the swirl of emotion and activity that surround a death. Notes to family members, for instance, or small changes to a will. Others are the product of grand efforts--novels, films, works of art--that leave a lasting mark. But I began to see that I could learn from all of them. A Lady in Hyde Park Visitors to my office are often impressed by the photographs that hang on the walls. It''s a collection, mostly, of large framed color photographs that I''ve taken and sold over the years, to support my university''s partnership with an AIDS hospice in Botswana. So visitors exclaim over my amateurish photographs of children and all manner of wildlife, and occasionally even purchase one, sending a few dollars to people in Africa whom they''ll never meet. But there is one photograph, hanging over my desk, which they seem to miss.


Much smaller than its neighbors, it''s in black and white. It seems to be hiding, unwilling to compete with its bright, oversized neighbors. The photo frames an elderly woman in profile, resting on a park bench in London''s Hyde Park. Both of her hands are tightening her collar against what I imagine to be a cold London spring day, giving her an attitude that, at first glance, looks like prayer. Her feet are extended delicately along the length of a cane that is propped on the edge of the bench in an artful arrangement that succeeds in seeming both clever and perfectly natural. The few visitors who do notice it mistakenly assume that it is my own work. No one yet has recognized it as one of the lesser-known photographs of the French photographer Henri Cartier-Bresson. What impressed me about that photograph when I first saw it years ago, and what induced me to pay far too much for an original print in a gallery in Milan, was the graceful ease of the woman''s position within the frame.


She doesn''t appear to be particularly fashionable, or elegantly dressed, and she is, after all, merely sitting on a park bench. Yet somehow out of that moment she has created a pose that succeeds in being both perfectly poised and--what is infinitely more difficult--perfectly natural. Even more striking than her pose, though, is the mental attitude that brought her to that position at that moment. There is an attitude of what I read as comfortable resignation that seems to cradle and inspire h.


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