The Best American Science and Nature Writing 2015 Page 10

  The medical staff—including an American doctor, a Spanish nurse, and a Kenyan nurse, along with a Liberian physician assistant, nurses, and other workers—put on protective equipment piece by piece to enter the treatment areas. Gloves, Tychem suits, masks, hoods, aprons, goggles, the ensemble checked in a mirror to ensure no skin was showing. The process took about 20 minutes.

  A doctor, Steven Hatch, entered the ward of patients with suspected Ebola infections and asked them if they were hungry. “How do you feel?” he said to one. A woman in a T-shirt walked stiffly behind him carrying a plastic chair, which looked heavy in her weak hands. Staff members outside the patient area dropped in bottles of water and pitched plastic garbage bags over a gate from the gowning room, never touching. Cleaners had gone in ahead of the medical team and were spraying the ground with chlorine solution and picking up garbage with buckets that looked just like the ones that held the yam cereal.

  Staff members observing outside debated whether a set of wooden game tables with dice could be given to patients in the suspect ward. Mr. Casey decided against it, for fear of sickening someone not infected; only those confirmed Ebola patients could safely play together. Friederike Feuchte, a German psychologist, understood but was disappointed. “They feel bored,” she said of the patients awaiting their test results.

  One of them, Kolast Davies, 45, agreed. “Being here is stressful and very boring, especially when you don’t know your fate,” he said in an interview. He was admitted after managers of the steel production company where he works, ArcelorMittal, sent him when he returned from a vacation in Monrovia. Now, three days later, his test results were not back. He looked healthy, and the medical team wanted to make sure he did not contract Ebola from the other patients. “They told me I should be very mindful of others. No touching,” he said. His bed, like the others in the unit, was in an 8-by-10-foot space separated from others by wood-framed walls of tarp, and he shared a latrine with other patients.

  One night, he said, someone died under the same roof. “It’s too pathetic,” Mr. Davies said through tears. “I think the world needs to come.”

  10 a.m.

  Two men wearing yellow protective suits and thick rubber gloves left the clinic carrying a body bag on a stretcher. As they walked through tropical forest filled with birdsong, another man followed behind, spraying the dirt path until the brown leaves glistened with bleach solution. They were burying a 38-year-old man. In the final stages of his illness, he had left his bed, disoriented, and curled up against a 50-year-old woman who had died. A nurse found them lying together the next morning, a scene Dr. Hatch called “simultaneously touching and horrifying.”

  Now the man’s body bag dripped as the burial team lowered it into a freshly dug hole, across from the grave of the woman, which was marked with a simple wooden sign. His was the seventh body on the grounds of the new treatment center. Ten more holes had already been dug, and four men with shovels stood by watching. No prayers were spoken, no tears were shed in what has become a new, numbed burial rite. As they returned, the team sprayed their path all the way back to the morgue.

  10:50 a.m.

  Doctors went over the first set of test results from a new mobile lab that the United States Navy had set up the previous day on the grounds of the local university. It seemed miraculous: test results would now be delivered in just a few hours instead of the four to five days required earlier, when samples had to be driven to Monrovia and were sometimes lost. Mr. Davies learned that he tested negative for Ebola and could leave.

  Encircled by orange fencing, the center looks something like a detention facility. In truth it would be easy to escape; one confused patient had already wandered onto the driveway and been escorted back to the ward. No armed guards watch outside, and the entries to patient areas are not secured.

  Another patient, Lorpu Kollie, 28, rejoiced after being told she was not on the list of those whose tests indicated infection. She called her parents to tell them she was going home. But a staff member had mistaken her for someone else; in fact her blood sample, drawn nearly a week earlier, had tested positive for Ebola.

  Given the new diagnosis, Ms. Kollie was devastated and refused to move to the confirmed Ebola ward. Dr. Feuchte, the psychologist, went to meet with her. “I told everybody I am coming home,” Ms. Kollie told her, crying. Dr. Feuchte said that she could stay put for now and they would test her again. A fellow patient sought to reassure Ms. Kollie, reminding her that she could be all right. Don’t worry, she said, “only few more days.”

  Even with the new lab, something as basic as blood tests still posed outsize challenges. The intense disinfecting process sometimes erased or eroded patient identification numbers from tubes and paper, making them difficult or impossible to read. Each blood draw was risky for staff members, particularly because the syringes were difficult to manipulate with triple-gloved hands. “It would be inexcusable for us to have to take blood again and get a needle stick,” Dr. Bucks had said during the morning shift change. Within hours he and others devised a better system for identifying tubes and discussed ordering a different blood-drawing system that would be safer to use at patient bedsides.

  Noon

  Lunch arrived; the heat was stifling. The blue buckets that served yam porridge at breakfast were now filled with rice. Workers set out food on plastic foam plates in the staff sitting room, waiting for doctors and nurses to wolf it down when they found a free moment.

  1 p.m.

  A staff member returned from the local market with bags of secondhand clothing, items to replace patients’ clothes that were discarded because they were soiled or possibly contaminated. Among his haul: 20 lappas, local batik wraps worn as skirts; 20 bras; 30 pairs of socks; and piles of battered jackets and pants. “This is tenth-hand,” joked Eric Diudonne, a civil engineer, who sent the clothing over to the laundry staff to wash.

  The cleaners in the laundry room disinfected and washed the staff members’ scrubs, goggles, rubber gloves, aprons, and boots in vats of diluted bleach and then ran them through a washing machine. The items were taken outside to dry, stiff aprons hanging from a line and boots propped upside down on poles. Some patients passed the time by washing their own clothing by hand, but all patient bedding and clothing was burned after they were discharged or died.

  4:30 p.m.

  Nurses gowned up to give afternoon medicines, run intravenous fluids, and draw blood from new patients and three who had to be retested. And the new results arrived. Ms. Kollie was now negative, meaning that she had recovered from Ebola or her first sample had been mixed up with someone else’s. “Thank you, thank you!” Ms. Kollie rejoiced when she was told the news. She danced and reached out her arms as if to hug the staff, who were separated from her by plastic fencing. “I’m coming home,” she told her parents on the phone.

  She stepped into a shower for 10 minutes of scrubbing, with a nurse giving instructions. She dropped a handful of belongings, including money, a small change purse, and a cell phone, into a bucket of chlorine for disinfection. (She said she did not care that the phone might not survive.) Someone handed her a bag with a fresh set of clothing and $10 for transportation.

  It had rained briefly. Looking out from the hilltop, Ms. Kollie saw a rainbow.

  7:10 p.m.

  The day team handed off the patients to the night crew. Several patients appeared to be doing better. And some whose tests turned out to be negative would be going home the next day.

  But, a nurse reported, one man had vomited in the yard. Others had found a sheathed knife under his pillow, and he explained that he would rather die from a knife than from Ebola. Two days later, the disease killed him.

  ATUL GAWANDE

  No Risky Chances

  FROM Slate

  I LEARNED ABOUT a lot of things in medical school, but mortality wasn’t one of them. Although I was given a dry, leathery corpse to dissect in anatomy class in my first term, our textbooks contained almost nothing about aging or fra
ilty or dying. The purpose of medical schooling was to teach how to save lives, not how to tend to their demise.

  I had never seen anyone die before I became a doctor, and when I did, it came as a shock. I’d seen multiple family members—my wife, my parents, and my children—go through serious, life-threatening illnesses, but medicine had always pulled them through. I knew theoretically that my patients could die, of course, but every actual instance seemed like a violation, as if the rules I thought we were playing by were broken.

  Dying and death confront every new doctor and nurse. The first times, some cry. Some shut down. Some hardly notice. When I saw my first deaths, I was too guarded to weep. But I had recurring nightmares in which I’d find my patients’ corpses in my house—even in my bed.

  I felt as if I’d failed. But death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. I knew these truths abstractly, but I didn’t know them concretely—that they could be truths not just for everyone but also for this person right in front of me, for this person I was responsible for.

  You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. These days are spent in institutions—nursing homes and intensive-care units—where regimented, anonymous routines cut us off from all the things that matter to us in life.

  As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did. Lacking a coherent view of how people might live successfully all the way to the very end, we have allowed our fates to be controlled by medicine, technology, and strangers.

  But not all of us have. That takes, however, at least two kinds of courage. The first is the courage to confront the reality of mortality—the courage to seek out the truth of what is to be feared and what is to be hoped when one is seriously ill. Such courage is difficult enough, but even more daunting is the second kind of courage—the courage to act on the truth we find.

  A few years ago I got a late-night page: Jewel Douglass, a 72-year-old patient of mine receiving chemotherapy for metastatic ovarian cancer, was back in the hospital, unable to hold food down. For a week her symptoms had mounted: they started with bloating, became waves of crampy abdominal pain, then nausea and vomiting.

  Her oncologist sent her to the hospital. A scan showed that despite treatment, her ovarian cancer had multiplied, grown, and partly obstructed her intestine. Her abdomen had also filled with fluid. The deposits of tumor had stuffed up her lymphatic system, which serves as a kind of storm drain for the lubricating fluids that the body’s internal linings secrete. When the system is blocked, the fluid has nowhere to go. The belly fills up like a rubber ball until you feel as if you will burst.

  But walking into Douglass’s hospital room, I’d never have known she was so sick if I hadn’t seen the scan. “Well, look who’s here!” she said, as if I’d just arrived at a cocktail party. “How are you, doctor?”

  “I think I’m supposed to ask you that,” I said.

  She smiled brightly and pointed around the room. “This is my husband, Arthur, whom you know, and my son, Brett.” She got me grinning. Here it was, 11 at night, she couldn’t hold down an ounce of water, and she still had her lipstick on, her silver hair was brushed straight, and she was insisting on making introductions.

  Her oncologist and I had a menu of options. A range of alternative chemotherapy regimens could be tried to shrink the tumor burden, and I had a few surgical options too. I wouldn’t be able to remove the intestinal blockage, but I might be able to bypass it, I told her. Or I could give her an ileostomy, disconnecting the bowel above the blockage and bringing it through the skin to empty into a bag. I would also put in a couple of drainage catheters—permanent spigots that could be opened to release the fluids from her blocked-up drainage ducts or intestines when necessary. Surgery risked serious complications—wound breakdown, leakage of bowel into her abdomen, infections—but it was the only way she might regain her ability to eat.

  I also told her that we did not have to do either chemo or surgery. We could provide medications to control her pain and nausea and arrange for hospice care at home.

  This is the moment when I would normally have reviewed the pros and cons. But we are only gradually learning in the medical profession that this is not what we need to do. The options overwhelmed her. They all sounded terrifying. So I stepped back and asked her a few questions I learned from hospice and palliative-care physicians, hoping to better help both of us know what to do: What were her biggest fears and concerns? What goals were most important to her? What trade-offs was she willing to make?

  Not all can answer such questions, but she did. She said she wanted to be without pain, nausea, or vomiting. She wanted to eat. Most of all, she wanted to get back on her feet. Her biggest fear was that she wouldn’t be able to return home and be with the people she loved.

  I asked what sacrifices she was willing to endure now for the possibility of more time later. “Not a lot,” she said. Uppermost in her mind was a wedding that weekend that she was desperate not to miss. “Arthur’s brother is marrying my best friend,” she said. She’d set them up on their first date. The wedding was just two days away. She was supposed to be a bridesmaid. She was willing to do anything to make it, she said.

  Suddenly, with just a few simple questions, I had some guidance about her priorities. So we made a plan to see if we could meet them. With a long needle we tapped a liter of tea-colored fluid from her abdomen, which made her feel at least temporarily better. We gave her medication to control her nausea. We discharged her with instructions to drink nothing thicker than apple juice and to return to see me after the wedding.

  She didn’t make it. She came back to the hospital that same night. Just the car ride, with its swaying and bumps, made her vomit, and things only got worse at home.

  We agreed that surgery was the best course now and scheduled it for the next day. I would focus on restoring her ability to eat and putting drainage tubes in. Afterward she could decide if she wanted more chemotherapy or to go on hospice.

  She was as clear as I’ve seen anyone be about her goals, but she was still in doubt. The following morning she canceled the operation. “I’m afraid,” she said. She’d tossed all night, imagining the pain, the tubes, the horrors of possible complications. “I don’t want to take risky chances,” she said.

  Her difficulty wasn’t lack of courage to act in the face of risks; it was sorting out how to think about them. Her greatest fear was of suffering, she said. Couldn’t the operation make it worse rather than better?

  It could, I said. Surgery offered her the possibility of being able to eat again and a very good likelihood of controlling her nausea, but it carried substantial risk of giving her only pain without improvement or adding new miseries. She had, I estimated, a 75 percent chance that surgery would make her future better, at least for a little while, and a 25 percent chance it’d make it worse.

  The brain gives us two ways to evaluate experiences like suffering—how we apprehend such experiences in the moment and how we look at them afterward. People seem to have two different selves—an experiencing self who endures every moment equally and a remembering self who, as the Nobel Prize–winning researcher Daniel Kahneman has shown, gives almost all the weight of judgment afterward to just two points in time: the worst moment of an ordeal and the last moment of it. The remembering self and the experiencing self can come to radically different opinions about the same experience—so which one should we listen to?

  This, at bottom, was Jewel Douglass’s torment. Should she heed her remembering self—or, in this case, anticipating self—which was focused on the worst things she might endure? Or should she listen to her experiencing self, which would likely endure a lower average amount of suffering in the days to come if she
underwent surgery rather than just going home—and might even get to eat again for a while?

  In the end a person doesn’t view his life as merely the average of its moments—which, after all, is mostly nothing much, plus some sleep. Life is meaningful because it is a story, and a story’s arc is determined by the moments when something happens. Unlike your experiencing self, which is absorbed in the moment, your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works out as a whole. That is profoundly affected by how things ultimately turn out. Football fans will let a few flubbed minutes at the end of a game ruin three hours of bliss—because a football game is a story, and in stories, endings matter.

  Jewel Douglass didn’t know if she was willing to face the suffering that surgery might inflict and feared being left worse off. “I don’t want to take risky chances,” she said. She didn’t want to take a high-stakes gamble on how her story would end. Suddenly I realized she was telling me everything I needed to know.

  We should go to surgery, I told her, but with the directions she’d just spelled out—to do what I could to enable her to return home to her family while not taking “risky chances.” I’d put in a small laparoscope. I’d look around. And I’d attempt to unblock her intestine only if I saw that I could do it fairly easily. If it looked risky, I’d just put in tubes to drain her backed-up pipes. I’d aim for what might sound like a contradiction in terms: a palliative operation—an operation whose overriding priority was to do only what was likely to make her feel immediately better.

  She remained quiet, thinking.

  Her daughter took her hand. “We should do this, Mom,” she said.

  “Okay,” Douglass said. “But no risky chances.”