Plague Years

by Ross A. Slotten, MD

Bill was my final patient that day. It was a Tuesday in February 1992, one of my late nights when I finished seeing patients at the office at 7:00 p.m. When I entered the examination room, he was sitting on the bulky leather table leaning against the wall, the picture of despair. Already weary after a twelve-hour day, at that depressing image I felt as if I were a deflating balloon, but I did my best to appear fresh and interested. His mother and his lover David, who was also one of my patients, sat facing me. They were all pale, but for different reasons: Bill, who was gaunt, anemic, wasting away, skeletal and dying of AIDS; David, Italian, robust, chubby, and balding, with unblemished olive skin and large imploring, frightened brown eyes; and Bill’s mother, a quiet and reticent lady with pale skin and a likeness to her son—the same blue eyes, a “lantern jaw,” her lower lip tucked beneath the upper one.

  Bill had once been stoic, but by this stage in his illness he tended to become strident. With each complaint his voice rose into a high tenor and then, as if overcome by the force of his feelings, dropped into a lower register as he collapsed into hopelessness and despair. The preceding weeks hadn’t been good for him. After he developed numbness and weakness of the left side of his body, I’d ordered a brain scan. The scan showed multiple round tumors whose edges lit up like rings with contrast material. At first I thought he had toxoplasmosis, a once-rare infection picked up from cats or from eating raw meat that had become common since the onset of the AIDS epidemic. Although a screening blood test for the infection was negative, I put him on medications for it anyway. After only one week he stopped them because of intolerable side effects, mainly intractable diarrhea and stool incontinence. The next step was to try something experimental, but I needed a definitive diagnosis before applying for it through an expanded access program. That program, sanctioned by the Food and Drug Administration at the urging of AIDS activists, permitted the use of promising medications in life-threatening situations before their ultimate approval and marketing. The application process wasn’t onerous, and if the patient was approved he received the drug free of charge.

  To get a definitive diagnosis, I needed a brain biopsy. Bill reluctantly agreed, but the process leading up to the biopsy had turned into a small fiasco. I consulted a neurosurgeon, who scheduled the biopsy, but his nurse ordered the wrong preoperative laboratory tests. Moreover, when Bill showed up for the blood draw, no one had any orders at all and he was redirected to the admitting office for clarification. Someone had ordered an EKG and chest x-ray. Bill protested their necessity. The clerk dismissed his protests. Telephoning me in anger, Bill accused everyone of incompetence and lack of caring. He hadn’t even met the neurosurgeon and no longer wanted the biopsy.

  “No one listens to me!” he exclaimed.

  The brain biopsy frightened Bill, as it would frighten anyone, because the brain isn’t an organ that can regenerate. Any damage to it is permanent and irreversible. Normally such a procedure, although scary in concept, was uneventful and didn’t require admission to the hospital, because complications were rare and the amount of material collected was minuscule. But our arrangements looked sloppy and seemed to forebode disaster. When consoling and reassuring Bill didn’t work, I suggested delaying the procedure because I didn’t want him to have a biopsy if he felt angry, frustrated, or afraid. I also hadn’t forgotten that he was a lawyer. After a half hour of pushing and pulling, he again agreed to undergo the procedure. We did need one more test, I told him, which could only be performed at the hospital. Taking personal responsibility for ensuring smoothness and accuracy, I scheduled the test myself and promised to call him twenty-four hours afterward to give him the results, which I did. I had regained his confidence.

  The day after the biopsy itself, he called to inform me that he’d developed sudden weakness of his left hand immediately after the biopsy, which didn’t seem possible to me because the sample was taken from a site nowhere near the area of his brain controlling muscle function. When I spoke to him a couple of days later, he said he was worse. I didn’t have good news for him: the biopsy didn’t show toxoplasmosis. The result was helpful only because it narrowed the possibilities to untreatable conditions.

  These were the circumstances that had led to that early evening visit. An aura of sadness filled the room, as there usually is in this kind of situation. I began by recapping Bill’s recent medical history, mostly for his mother’s sake. In November 1991 Bill had developed CMV retinitis and lost a lot of weight, but with treatment he recovered some of his vision and weight. In January when he complained of numbness on the left side of his body, a brain scan proved abnormal, which is what ultimately led to the brain biopsy. His mother nodded now and then as if understanding my words, though she showed little emotion. It was hard for me to know what she was really feeling. I spoke as simply as possible, defining my terms. I glanced over to Bill, who sat with drooping shoulders against the wall, squinting behind glasses with a mixture of pain and annoyance. Occasionally he sighed. David’s eyes were wide and doelike. He leaned forward, clutching Bill’s coat. I explained that even if we could treat Bill’s current problem, something would eventually happen that wasn’t treatable.

  And then I moved on to the part of the conversation that was inevitable when speaking to the families of a terminally ill patient: what to do next. In the process of death and dying, patients follow Elizabeth Kubler-Ross’s five-stage algorithm, although always shifting among levels not in clearly delineated steps but in a two-step-forward, one-step-back pattern. So do the relatives, but often they’re out of step with the patient or the doctor. Those five stages are shock, denial, anger, bargaining, and acceptance. David was in the bargaining stage; Bill was on the verge of acceptance; his mother—I wasn’t sure. David asked if there were any other therapies available. What about intravenous Vitamin C or anything else? Should Bill see a neurologist? Who was the best neurologist in Chicago? Should he go to New York City or San Francisco? Bill’s mother nodded passively.

  “What about my hand, my hand?” Bill asked sharply. “I can’t move it. It got worse right after the surgery.”

  Really? I thought. In my mind it was a progressive problem, not sudden in onset—a result of whatever was causing the lesions in his brain.

  Sighing with disgust, Bill said, “I told you. No one ever listens!”

  But he wasn’t as forceful as he might have been. He was full of despair, which blunted his anger. I choked on my words and felt my cheeks grow hot. Was I blushing? I cursed my lack of control over my autonomic nervous system. How was I to save face? Did I need to save face? Was I going to be sued? I’d promised Bill no ill effects from the procedure and then had noted all the problems leading up to the biopsy. Disaster? No, I thought, but I felt terrible. There was nothing that could be done about the hand. David and Bill focused on an unfortunate symptom and avoided the bigger picture.

  The truth was, Bill was dying and no one wanted to confront this fact. Our conversation circled the issue, though I’d been building up to it. At the critical moment I was again too cautious. I’m generally not direct or blunt when talking about death. I’m like a director who creates the scene and then hopes the characters will appear on cue, ready to play their parts. But usually it turns out to be an in medias res drama, where the characters stumble onto the truth after much pain and many missteps, regardless of the director’s earnest efforts. I’m never in as much control as I’d like to be. No matter how much I try to anticipate thoughts, feelings, and expectations, I can’t know exactly what goes on in people’s hearts. We all have different agendas and different methods for coping with stress. In this instance, I’d hoped that Bill, his mom, or David would bring up the issue of death, but they weren’t ready, and my attempt to bring them to that point fell flat.

  I offered the name of a nationally recognized expert in AIDS-related neurological diseases, at Northwestern. David conceded that it was Bill’s decision, but Bill made no specific comment about my recommendation. I examined him in a cursory manner and note
d that his left hand was indeed weak, although he could move the rest of his arm. His left leg was also slightly weak. When I poked him with a pinwheel, his sensation was diminished but not absent on the left side, especially on his left hand and forearm. His knees and arms kicked and jerked symmetrically at the mild pounding of my red rubber reflex hammer. From a neurological perspective the findings made no sense to me, but my knowledge of neurology was fuzzy. I still wondered whether the weakness was some sort of hysterical reaction, something psychological rather than physiological. I didn’t want the findings to be real, because if they were they might somehow have occurred as a result of the brain biopsy—a slight amount of swelling in the brain, perhaps.

  I prescribed a powerful steroid medication that could reduce swelling in the brain from lesions or trauma. In seventy-two hours we might see improvement, I said, but that wasn’t enough for Bill. He wanted to try the experimental medication for toxoplasmosis. I wasn’t sure I could get it for him because his tests weren’t consistent with toxoplasmosis, but I promised to do my best. The manufacturer might release it based on the brain scan alone, I said.

  Thirty emotionally taxing minutes had passed. I felt drained. I asked Bill to call me in three days to report his progress. When I shook his mother’s hand, she smiled. Bill hugged me. There was no animosity toward me after all, I thought. He was so thin, fragile, and weak. He smiled at me in his usual fashion, eyes shut, crow’s feet on the edges, nose scrunched as if he’d tasted something tart. David looked terrified. Anxiety seemed to course like electricity beneath his smooth, pale olive skin. He too hugged me. They were all desperate, grasping at straws.

  I fought off feelings that Gavin described in himself, the sense that Dr. C., the neurologist at Northwestern, would expose me as an impostor. Here I was, an expert in the new field of HIV/AIDS medicine, respected for his knowledge and expertise yet obsessed by irrational, even ludicrous thoughts! As an expert, I’d been accustomed to being the person from whom patients sought second opinions, and now I was being questioned. After all these years second opinions still threatened me, making me doubt my judgment and skills. I could trace the thread of insecurity far back into childhood, when I was a kid in second grade who stood up and cried because a prize had been given to a student who’d performed as well as I.

  “You have to let other people win too,” my beloved teacher had chided me. She was right, but the decision didn’t hurt any less.

  Already composing a history and defense of my management with an imaginary Dr. C., I feared being accused of incompetence and criticized for improper care. But what if I’d been wrong not only in my diagnosis but also in my treatment plan? Even though Bill’s death was preordained at this point, such an error could have shortened his life by a few precious weeks or months, robbing him of quality time with his lover and mother. I was acutely aware that doctors make mistakes, and sometimes I held myself to standards that were impossibly high: the truth is that sooner or later we all err, sometimes grievously. Surgeons may inadvertently lacerate an organ; nonsurgeons may miss a brewing cancer. Practicing medicine is a balancing act: I had to inspire confidence in my patients while at the same time maintaining a degree of humility and avoiding arrogance. A hint of humility made you more human. I said goodbye, and Bill walked gingerly out of the room with a slight limp, supported on either side by mother and lover.

  A few weeks later Bill was back in the hospital. Dr. C. had found nothing amiss in our workup or management and had nothing new to offer. In the meantime Bill had developed fevers, more weakness, and shortness of breath. A blood test showed severe anemia, and I ordered a blood transfusion. A few days later he was extremely short of breath and his lips, fingers, and toes were blue. A chest x-ray revealed pneumonia, and his white blood cell count had dropped to a dangerously low level. Although doses of steroids boosted his energy, his death now seemed imminent.

  David urged me not to say anything negative to Bill. Although I obliged, I insisted that David himself have a frank talk with me. He was more resigned to Bill’s fate than he’d been four weeks earlier. Could I have helped him more by telling him that his own HIV test one and a half years earlier was negative? He’d never called me, but I couldn’t stand it anymore. He almost yelled at me when I started to tell him, but when he heard the news, tears came to his eyes and he embraced me, sobbing. He said that he’d planned to wait until “it was all over with Bill” before calling me to get the results. It wasn’t something he could deal with while Bill was alive.

  For comfort, I put Bill on a morphine drip. He was also on a number of other medications, including one to treat PCP, for that had recurred despite attempts to prevent it, and two antibiotics to treat other infections that might be brewing but not yet detected. It was a move of desperation. I was casting a wide net in one final attempt to save his life. Through a mask I pumped the maximum amount of oxygen I could give him without placing him on a ventilator. He puffed away, although he was still alert and appeared comfortable. He asked me when he could go home. I told him that he could go when it was obvious that his condition had improved, an answer he accepted. Before I left, he vomited some blood.

  Distressed, David wondered if he should remain at Bill’s bedside and not go to this office. I urged him to leave in order to get some rest, but he opted to stay. He started to cry again when he told me that Bill’s mother was flying in and would take a cab to the hospital. I’m not sure what provoked the tears, except that he was afraid of alarming Bill and conveying the message that the end was near. I doubted Bill would last the night.

  When I entered his room at 6:30 the following morning, he was “Cheyne-Stoking,” a form of respiration characterized by deep, rapid breaths alternating with periods of shallow breathing or no breathing at all, a sign that his death was imminent. Bill’s mother sat on a futon the nurses had brought her; David leaned forward on one of the chairs, bracing his knees with his hands and watching his lover’s final gasps. It had been a bad night. To make Bill more comfortable, the head of his bed had been elevated at a 45-degree angle, but he looked anything but comfortable. His head was cocked at an awkward angle, and his chin rested on his right shoulder while his arms hung limply at his sides. His face had a waxlike quality, the taut skin outlining the underlying bone. I lifted the lid of one of his partially open eyes and noted a fixed and dilated pupil, another sign of impending death. The only sound in the room was his waxing and waning breaths, amplified by the oxygen mask. When I called his name, he didn’t respond, nor did I elicit any reaction as I dug a knuckle into his sternum—a maneuver that might seem cruel but is meant to assess the level of consciousness and degree of brain damage. I picked up the covers and moved his legs, which were as flaccid as those of a rag doll. His heartbeat remained surprisingly strong.

  I motioned to Bill’s mother and David, and we walked across the hall to the lounge. It’s my practice not to have difficult conversations in front of a comatose patient. One never knows what he can hear or understand, though now that his pupils were fixed and dilated, Bill’s higher cognitive functioning had ceased and he would have heard or understood nothing. I also don’t believe in telling the patient one thing, the family another. During a telephone conversation earlier, Bill’s mother had expressed concern that David was still in denial about her son’s illness. David kept talking as if there was still hope, she said. I explained to her that everyone reaches acceptance at different rates.

  The filthy state of the lounge on 11 West embarrassed me. The air was thick with cigarette smoke. Ashes and bits of food soiled the table. Someone had forgotten to turn off the television. I turned it off. The three of us sat down and reviewed Bill’s current condition. Things looked ominous, I said. The conversation continued along these lines for a few minutes before David instinctively got up and rushed to Bill’s side. Moments later he motioned to us.

  “I think he’s dead,” he said.

  When I entered the room, Bill’s position hadn’t changed, but the Cheyne-Sto
ke breathing had ceased and his mouth hung open without a twitch or quiver. I took my time examining him, putting my fingers on his cooling wrist to feel for a pulse and then shining a light into, away from, into, and away from his glazed eyes until I was satisfied that they didn’t react. I removed the ophthalmoscope from its perch on the wall above the headboard and bent downward, my nose almost touching his waxy gray cheek as I peered into both retinas to look for the telltale signs of the cessation of active circulation. As I slowly drew back, I removed my stethoscope from a side pocket, slipped its earpieces into my ears, and pressed the bell onto the left side of his chest, listening for a couple of minutes. It was like being inside a shell, the outside world blocked out almost completely, my own breathing all that I could hear. When I couldn’t detect heart sounds, I stood up and let the earpieces slide down around my neck. It was at this point that I pronounced him dead.

  Bill’s mother sobbed uncontrollably, her head bent toward her chest and hands raised to her temples. David looked stunned but remained in control of his emotions. Bill’s mother’s tears brought tears to my own eyes. During the last few months I’d become fond of her. Even in the worst times she was soft-spoken and calm, and clearly loved her son. At no point did she pass judgment on the nature of his illness. Her southern accent charmed me, and I’d miss my morning discussions with her, even though those discussions had centered on Bill’s depressing condition. Despite the stress of caring for him and the relief I felt at his passing, I would also miss Bill. The most difficult period for me had come toward the end when he grew contentious and irritable, testing my patience and forcing me to question my clinical competence. But who wouldn’t be contentious and irritable in such a situation? Bill had otherwise been a pleasure to know, and his death filled me with immense sadness.

  I didn’t linger long in Bill’s room because I had other patients to see in the hospital that morning, and I’d promised to visit a patient at home before going to my office. Leaving Bill’s mother and David to grieve privately, I frantically tried to round on everyone else before 9:00 a.m. I had a painful conversation with Justin, whom I’d admitted recently for pneumonia. In the past I’d treated him for KS and an infection called MAC, from which he’d recovered. Since admission, his condition had worsened. In addition to pneumonia, his bone marrow was failing—his red and white blood cells and platelets were low, which put him at risk for other serious infections, heart failure, and a life-threatening hemorrhage.