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Code Pearl
UNTIL SHE WAS SEVENTY-NINE, MRS. D HAD BEEN perfectly healthy. She lived just down the street from the neo-Rococo cathedral that marks the Italian quarter of our city, and there she’d been baptized and married, and buried her husband. On the whole, she was satisfied with her life. She managed the small apartment building in which she lived; she was on the board of the Italian-American Association; and every Sunday she cooked dinner for her only son. An expert seamstress as a young woman, even now she mended the church’s linens, taking pleasure in their delicate embroidery. On Thursdays she played pinochle—for money—with her friends, and drank her weekly beer. Then, unexpectedly, her kidneys shut down, and she had to go on dialysis, each Monday, Wednesday, and Friday from 8 a.m. to 2 p.m. It was unpleasant and disruptive. Although her excellent doctors were, at first, mystified, eventually they discovered that a cancer had infiltrated her kidneys. Once Mrs. D had her chemotherapy, the kidneys recovered, dialysis was stopped, and she returned to her pleasant and industrious life. Until a few months ago, that is, when Mrs. D’s kidneys shut down once again. Her doctors hospitalized her and found that the cancer had returned and spread and that, this time, there was no treatment. They recommended, therefore, that she become a DNR (Do Not Resuscitate), that comfort care be instituted, and that dialysis be stopped. Now Mrs. D and her son were agreeable to a DNR order. As they understood it, it meant that when Mrs. D died, there would be no attempt to resuscitate her (as would be done without a DNR order); they realized that given her terminal diagnosis, such attempts would be futile. But they did not want to have dialysis stopped—and therein lay the rub. Her doctors felt strongly that continuing dialysis would be unethical, because it would only prolong her suffering. But without dialysis, Mrs. D would die in a few days, and neither she nor her son was ready for that. So her son checked her out of that hospital and brought her to ours. Actually, I could see his point. In person, Mrs. D was much more lively than she was on paper. Her thick, white hair was perfectly coiffed; her brown eyes were tired but sharp; her fingernails, polished; and her voice, when she introduced her-self, resonant. It was easy to see why neither she nor her son wanted dialysis stopped; why, in fact, they wanted everything done, including hospital admissions, x-rays, and blood tests—at least for now, and perhaps even up to her death, which might not be for many months. She might well regain considerable strength, heal her wounds, and brighten up once her medications were adjusted, her pain controlled, and her depression treated. It was also obvious why, when she did die, any attempt to resuscitate her would be futile. So after writing orders for her dialysis, her medications, and her blood tests, I also wrote an order for a DNR, knowing that my DNR order was going to create confusion. If Mrs. D had to go to an emergency room (ER), I knew from past experience, the ER doctor would soon call to ask why someone with a DNR was supposed to have scans. If she were admitted, the medical resident would call next, asking me to "clarify her advance directives": She was a terminal patient with a DNR order—so why was she on dialysis? Why was she admitted to the acute care hospital? And most of all, why was she in his intensive care unit? I would have to explain to each that Mrs. D’s DNR order had nothing to do with her treatment; all it meant was that when she died, no efforts at resuscitation were to be made. Of course, in theory, I shouldn’t have to explain this; all a DNR order should mean is Do Not Resuscitate. But in practice, which medical order a patient chooses—Full Code (Code Blue) or DNR—has unintended consequences. Because Full Code is taken to mean "Full Court Press" and DNR to mean "DNRx"—Do Not Treat. Thus, patients who choose DNR are assumed to want no life-prolonging therapy, while patients who choose Full Code are assumed to want everything done, whether reasonable, unreasonable, or even futile. That is why ER physicians and medical residents have such a hard time understanding what to do with a patient who has a DNR. That’s also why so many terminal patients choose a Full Code; they want to make sure that everything will be done to keep them alive, even though they might not wish, in fact, to have a Code Blue after their death. I wrote Mrs. D’s DNR order anyway, but I wished that there were some other order I could write—some third option that would make clear that Mrs. D was a person who wanted everything done to prolong her life and nothing futile when she died. As it turned out, we all were lucky, because Mrs. D never did go to an ER—although she almost did—in the process illustrating not only what that third option might look like before death but after death, too.
FOR SEVERAL WEEKS, MRS. D DID REASONABLY WELL. Her pain resolved, her appetite improved, and she became much more cheerful. White-haired friends in dapper suits appeared; there were card games and even, I believe, beer. But then, one morning, Mrs. D wasn’t quite right. Her color was off, for one thing—too yellow, too pale, to be simply from her kidney failure. Worse, when I asked her how she was, she looked at me unseeingly and said in a distraught voice, "I’m waiting for my mother!" Now, it’s not true that people predict their death—not in my experience. Even the old man who tells me, "Tonight! Tonight! Jesus is coming for me!" has not, yet, been correct; often that’s precisely the night he starts to get better. Although it is true that people can sometimes plan their death—holding out, somehow, until their grandson’s wedding or their niece’s arrival. Still, for a sick patient to be expecting a dead relative is a poor prognostic sign, and I called to let her son know that I was sending his mother to the ER. "Mom’s expecting me in half an hour," he told me. "Can you wait until then?" Thirty-five minutes later, he appeared at the door of my office. "Doctor, can you look at my mother? Something’s wrong." Together we walked into her room. His statement was an understatement. Mrs. D was dead. I was sure of it, although she was still sitting in her wheelchair. But her head was tilted oddly back; her color was sallow; and she was perfectly still. We sat down, and I took her hand. It was warm. "I just got here," her son told me, breathlessly. He was staring at his mother. "I walked in and I said, ‘Hi!’ and Mom looked at me and said something I couldn’t understand, and I knew something was wrong so I hurried to get you." "Did she know it was you?" "Oh, yes." There was an uncanny air in the room, I noticed, exactly like when you enter a room that someone has just left and you can still feel the movement of their just-missed departure, their scent, their warmth. It was the first time I’d ever felt it. Usually the death of a patient with a DNR happens behind a closed door; by the time the physician arrives, not only the body but the room itself is cold. On the other hand, when a patient without a DNR dies, a Code Blue is called, and it, I now realized, masks the eeriness of the transition from life to death. The Code Blue is stressful, but it is also exciting—beepers going off, the frantic search for IV sites, the jolts of electric shock. There is no time to notice whatever eeriness there might be, and afterward—well, the Code Blue team disperses pretty quickly. Not only that, but the Code Blue provides a rhetoric of death for physician, family, and staff. Without it, Mrs. D’s death was too routine: The three of us—doctor, patient, son—were simply sitting together, on a Wednesday morning, in a room. Without a Code Blue to signal her death, I asked myself, how was I going to convey to her son what had happened? For that matter, without a Code Blue, how was I so certain that Mrs. D was truly dead? So I stood up and solemnly felt for her pulse for one minute—no pulse. Next, I put my hand on her chest for thirty seconds—no respirations. Then I flashed my light in her fixed pupils and with my stethoscope listened to her silent heart. During my entire exam the son held his breath, as if I might really turn to him and say, "No, she’s fine—just a little cold, just a little dead; she’ll be better in the morning..." "She’s passed," I told him. Now he looked closely at his mother’s face. Then he took her hand and said goodbye. After a few minutes more, I left to begin those tasks—charting the death, calling the coroner—that put some distance between us and Death. But then the social worker arrived, cheerful, English. "Do you think I might call the priest?" she asked. "Mrs. D and her son are Catholic; perhaps he’d like Last Rites." He did want Last Rites, and our priest, tall, gray-haired, and wearing a full-length black cassock with a rope belt, hurried up from his office. Her son invited me and the social worker back into the room, and the four of us gathered around the body, still in its wheelchair, with its head tilted back. It turns out that Last Rites is practically a full Liturgy, and it goes on for quite a while. All four of us stood around Mrs. D, and as it went on we could feel the air around her body slowly but relentlessly cooling. For the Kyrie, it was warm; by the end of the Penitential Psalms, its warmth had gone. Also the body was stiffening, the tilted head settling in its last-ever angle on the neck, and the nose growing more waxy and pointed with each verse. After the Psalms, the priest began asking the community of saints to pray for Mrs. D. First he asked the saints all together, and then the saints individually, starting with St. Andrew and ending with St. Sylvester. "St. Andrew, pray for her," he intoned. And we repeated after, "Pray for her." "St. Augustine, pray for her." We repeated, "Pray for her." And as we prayed, Mrs. D continued her transformation from body to corpse. Her lips shriveled, her teeth snaggled, and her skin became like yellowed dough. Her spirit moved into the window behind her ex-body, it seemed to me, politely waiting until the end of the service before slipping out to meet her mother. "St. Francis, pray for her." "Pray for her." Then there was St. Gregory and St. Lucy, St. Peter, and finally St. Sylvester. All were asked to pray for Mrs. D. During this ceremony, an unaccustomed silence prevailed in the hospital. No overhead announcements; no ambulance drivers rolling gurneys in or out; no television or radio, nurses’ conversations, or doctors’ beepers, not even mine. Within the room, when we had finished, it was as silent as a tomb. Mrs. D had gone. The priest shut his book with a snap, shook hands with the son, and left. I left to finish filling out the papers. The son left, too, to make his arrangements.
ALTHOUGH I WENT BACK TO MY TASKS, the uncanny feeling of gates opening between earth and heaven stayed with me. And it got me to thinking. First about a long-ago nurse I’d known—hard-bitten, the way old nurses should be. Marge believed that no one should die alone, and so she would stay late to sit with patients when they died, sometimes coming in from home. Even when the patients were demented, comatose, or brain-dead. She said it was important. And second, I thought about the pearly gates painted on the wall of Dr. T’s dying room, which is set up to look just like the rooms where people die in movies from the 1930s. Worn wood floor, single bed with twill spread, window with geraniums, the dying room is where people go for their final few days. Dr. T, our hospice director, has had the wall that the bed faces painted with seven coats of paint, in misty swirls of pearls and grays, so that a patient, he says, will see not a flat wall but something insubstantial and shimmering, like a cloud or a pearl. I lay on the bed and tried it once, and he was right. From the bed, the wall didn’t look like a wall but like a soft, iridescent space into which I could fly or float to some alternative, bodiless existence. Mrs. D’s Last Rites had brought me to the same mesmeric place—the gap between full-on life and full-on death. And I reflected what a stark choice patients are given—DNR or Full Code—not just until death but after death, too: either the peaceful but solitary death of the DNR or the futile panic of a Code Blue. Why, I thought, don’t we just combine the best features of all three—of Full Code, DNR, and Last Rites? There would, then, be a third option that we could offer patients—Code Pearly Gates—that would provide exactly what Mrs. D. had: all life-prolonging treatments until death, and afterward, some human presence. We could even create some kind of after-death ritual—a Code Pearl—for the non-Catholic. Perhaps, along the lines of the Code Blue team, there would be a Code Pearl team: priest, rabbi, or faith provider of choice, in cassock, robe, or stole, with others in the hospital who like to sit with the newly dead. Summoned not by beeper but by a few bars of Mozart, the Code Pearl team would not race but amble into the patient’s room. There they would chant or pray, read, or even practice silence during those eerie minutes of transition I experienced with Mrs. D, but whatever they did, they would be company. I can’t guarantee, of course, that a Code Pearl would work quite as well as Mrs. D’s Last Rites, though. There was something about that fifteen-minute litany of prayers, the incantations of the priest, and our participatory responses. It not only lasted just the right amount of time for a body to be surely dead—for the warmth, color, and light of the living to cool, fade, and dim—but it also prepared a welcome for the deceased into the community of saints. I’m not sure that Code Pearl would come even close to such a fine, poetic finale. But it would, at least, guarantee a kind, a warm, and a poetic farewell, not just for the dead but also for the living.
Victoria Sweet (Victoria.Sweet{at}ucsf.edu) is a physician and an associate clinical professor of medicine at the University of California, San Francisco; she is also the director of the Ecomedicine Project at Laguna Honda Hospital in San Francisco. Names and certain identifying details about people in the essay have been changed. The author thanks Patricia Wick for reading and commenting on drafts of this essay.
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A Third Option
