Plague Years

by Ross A. Slotten, MD

  Each day of my life during those dark times, I searched for some way to move forward. Days spilled into weeks, weeks into months, and months into years as the AIDS epidemic ground on. I wasn’t the only one grappling with these issues. There were tens of thousands of us throughout the country and world: public health officials; scientific and clinical researchers; doctors, nurses, physician assistants; and other caregivers, all of us dedicated to a single cause. We intersected at international, national, and local conferences, creating a network that laid the groundwork for finding some solution to the AIDS crisis, of whatever form. When that crisis would end, and how we would survive emotionally and professionally in the intervening time of uncertainty, none of us could fathom.

  : 2 :

  First Cairn (1984)

  For all my interest in gay men’s health, most of the patients I saw in my office in the first year of practice, 1984, were heterosexual. I filled my journals with descriptions of elderly men and women who came to me through the emergency department, often when I was moonlighting there (in those days you didn’t have to be board certified in Emergency Medicine to work in an ED). An ambulance had whisked them to St. Joe’s even if their primary care physicians were on staff at different hospitals. By law, the fire department had to bring patients to the hospital nearest their home. I admit that even from my earliest days in practice I had a weakness for old people. I did everything in my power to woo them, including making home visits after their discharge. Perhaps they reminded me of the grandparents I never took the time to get to know during my adolescence, when I was too self-absorbed to care about anyone but me.

  I kept journals because I fantasized that one day I would be a famous writer. In the early days I had no subject. It was important to write, write, and write, like a painter learning to paint. In college I had taken a creative writing course and dabbled in fiction. I read many of the great fiction writers—Tolstoy, Dostoyevsky, Mann, and Proust (all seven volumes) were among my early favorites. In those days I was such a fucking snob! Perhaps I still am. But I soon realized that I lacked the imagination to write a novel or short story. Soon I gravitated toward nonfiction. I read Darwin’s Origin of Species between my freshman and sophomore years and became a committed evolutionist. Decades later I would publish a biography of the man who formulated the theory of natural selection independently of Darwin, Alfred Russel Wallace; but in the 1970s that was an unforeseen outcome.

  One journal covers my first journey to Europe in 1977 after graduating from college, with sketches included, just like those of nineteenth-century travelers making a similar rite of passage. In my childhood we had never traveled internationally; in fact we rarely ventured beyond the Midwest. Extended travel was impossible because my father took only five days off a year. Once when I was ten years old—several months after John F Kennedy was assassinated—we drove to Washington, DC: two days there—four kids loaded into a bench seat in the back of the station wagon, my parents up front; one day to see the sites; one long day back. It was on this trip that I somehow learned to whistle—and I’m now a very good whistler with a strong vibrato—at my father’s encouragement and patient instruction. My mother kept a journal, which we all happily contributed to, but it’s lost. Perhaps inspired by that effort, I continued to journal on my own but with no clear plan for what I would do with its contents.

  I met Mrs. Cook on the very last paragraph of her long life (90 years!), as I put it in my journal from 1984. At first she looked like every other old lady I saw in the hospital or on the streets. Her face had less range of emotional expression because of diminished mobility (a flat affect, as psychiatrists called it), and her unique personality wasn’t apparent. But after talking to her, I realized that she harbored strong convictions. When emphasizing a point, she squeezed my hands, looking me right in the eye with an expression of defiance mixed with a yearning for love and affection. Having lived so many years, she said, she wanted to share her most instructive experiences with those of us who were young and striking out into the world. She made it clear that I was to be not simply her doctor but also a friend. Given a week, she would have recounted everything; but during rounds I had only a few minutes to lend an ear.

  Mrs. Cook boasted about all the young people who flocked to her and sought her wisdom. Her hairdresser Ron, for example, came to her apartment to cut her hair and confided “very personal things” to her. She accepted his homosexuality and adored him like a grandson. Here was an opportunity for my own confession, but I prevaricated and nodded with admiration at her open-mindedness. Professionally I still lived a closeted life.

  Between long hours of clarity Mrs. Cook had her mental lapses. She would argue endlessly with her son and daughter about her drinking problem. It seemed that a carafe of brandy would be emptied in one or two days. She insisted that she only took “nips” now and then to help her breathe and settle her stomach. They also chided her about her smoking, but she denied smoking more than one or two cigarettes a day. In my presence she polished off five or six. When reaching a climax in a conversation, she would grunt and groan as if gasping for breath or preparing to vomit. Then she would get restless and pace, unable to articulate what she was feeling. Her abdomen became distended and she belched a lot; but if she had her daily bowel movement, without which she would never be quite right, she said, her symptoms improved. On my first encounter of the alarming scene of her distension, I feared her death was imminent. But after a burp or a fart she recovered.

  Despite her age, she was still a sexual being and would make remarks that startled me, like referring to her cunt or hoping to get laid. In those early days of my career, I failed to realize how important sex is to the elderly; it was as if I thought the idea of sex disappears at some particular day or time, like menopause or qualifying for Medicare. When an octogenarian broached the topic, somehow I thought he or she was being “cute” and I laughed—just as I might laugh when a three-year-old says something precocious—having never considered that the desire for sex, like the lust for life, doesn’t end until your final breath.

  Not long before she died, I visited her apartment at the request of her daughter. She’d developed a small-cell cancer of the lung, and both lungs were riddled with tumors. Because small-cell cancers respond to chemotherapy, she agreed to treatment. Afterward the tumors seemed to have vanished. But “something wasn’t quite right,” her daughter said. Her mother refused to leave her apartment; she hadn’t ventured out in months except for treatment. Now she wouldn’t even do that. Fatiguing easily, she complained of abdominal pain and “pissing all over herself,” the unpredictability of which was one of the main reasons for staying home.

  Although the building she lived in was a bright new brick high-rise on the fringe of the Gold Coast, her apartment, decorated in fleecy grays and dull browns, belonged to an older era. The furniture had had an antique flavor even when purchased in the 1920s or 1930s. The glassware resembled prisms—it wasn’t sleek Finnish ware but the type seen in daguerreotypes or old European films. Dust puffed out of the carpets, and a haze of cigarette smoke choked the air. The ammonia odor of urine mixed with smoke and dust burned my nostrils. My father’s parents had a similar taste in interior design, but they were also obsessively neat, which Mrs. Cook was not. It surprised me that her children tolerated this degree of squalor, but Mrs. Cook was headstrong and allowed no one, especially her children, to interfere with her life.

  I held her hand as she spoke, looking at the parchmentlike skin and cords of veins that disappeared up the sleeve of her blouse. In comparison, my hands were pink and plump, the veins hidden within youthful flesh. She no longer bothered to color her hair, which was short and unkempt; mine, which was neat, lacked even a fleck of grey. Gnarled toes protruded from her slippers and dried urine stained her nightgown. At that moment, gazing at her weary face, I felt more like her grandson than her doctor—like a child in a lab coat. I couldn’t find much wrong when I listened to her lungs and heart. Her pulse was stro
ng and regular, and blood pressure was normal—or at least I couldn’t detect any new worrisome signs of a dangerous illness or recurrence of her cancer. Before I left she asked for a hug, and I promised to visit her again soon.

  A few days after my visit Mrs. Cook died at home, suddenly but peacefully. Although her death wasn’t unexpected, I was caught off guard. Although she had lived to be ninety and had cancer, I still felt that somehow I’d failed her. Her daughter had sensed that something was wrong, but I’d missed whatever it was. Was that failure due to inexperience, I wondered, or incompetence? I found it hard not to feel despondent, not only about her death but also about my inadequacy as a physician. But I wasn’t a failure or inept. Just three years in as a licensed physician, I was inexperienced. And I was not inured to life’s harshest reality: death.

  My first intimate experience of human death had occurred in anatomy class in 1977. As a child and adolescent I’d known something of death: an aunt had died of breast cancer; a kid in my brother’s grammar-school class had been killed in a bicycle accident; a neighbor had lost a battle with lung cancer; and a friend of a friend had been stabbed to death on my college campus one summer. But up to the time of this class, the death of a beloved person remained a theoretical concept. I’d never grieved the death of any human being, only that of a guinea pig named Peter whom I spoiled from the ages of six to twelve and buried in a shoebox in our backyard, with a stake to mark the spot and a promise never to forget my cherished childhood companion.

  In anatomy class, as we rolled out the cadaver from its refrigerated crypt and unwrapped the plastic encasement, I got goosebumps. Here was a dead person, naked and old. The pungent odor of formaldehyde distracted me from my discomfort. There were four of us in my dissection group, two standing on each side of the body. We said nothing as we contemplated the elderly black woman whose personal history we didn’t know. Had she been married? Had she worked? We would soon learn whether she’d had children. I marveled that this woman had donated her body to science. I asked myself if I would do the same, but I had no answer. It was impossible to think that far into the future or consider my own death.

  The dean, an ex-hippie not much older than I who kayaked every day from his home in Evanston to downtown Chicago—more than ten miles—lectured us about treating our cadavers with respect, as if he were a priest chastising a flock of sinners. Under pain of immediate suspension or expulsion, he said, we were not to play pranks like jumping rope with the intestines or tossing body parts at each other. A few people stifled laughs. Until he mentioned it, it would never have occurred to me to jump rope with an intestine. Why was he telling us this? Because it had occurred to someone there once. In retrospect, I recognized that this was our first lesson in medical ethics, which is nothing more than the Golden Rule, the one I grew up with: Do unto others as you would have them do unto you.

  On the first day of dissection, some people fainted. I didn’t; I felt awe-inspired. Death wasn’t the subject of anatomy; life was. We analyzed every aspect of our cadaver so that we could understand how each organ system functioned, in health and in disease. I memorized the names of arteries, veins, and nerves; isolated each muscle; and examined the skeleton. In short, I learned what made humans human. At first it amused me when the chief of pathology, a forensic pathologist, lectured to us about his “patients.” A short and unintentionally funny man with bushy, mobile eyebrows and exaggerated hand movements, he could never convince me that his so-called patients were anything more than anonymous corpses on whom he performed autopsies. I didn’t appreciate that these individuals, who had lived and loved as much as anyone until their lives ended, meant as much to him as the people I cared for would later mean to me.

  I witnessed my first death in medical school during a cardiac arrest, as doctors, nurses, and technicians swarmed around a patient—unknown to most of them—to try to resuscitate him. At the time I could do nothing but observe a process that was both orderly in its adherence to protocol and chaotic because of the number of people involved. We’d shock the heart with electrified paddles, causing the body to jump like a ragdoll, push oxygen into lungs through a tube, pump the patient with a variety of chemicals to keep the heart going if we conjured a heartbeat, prop up the blood pressure, and pour in fluids through one or more veins to keep the kidneys from shutting down. Sometimes we “worked on” the person, as we put it, for a long time until the attending physician ordered a stop to the heroics. Other times, when a case seemed hopeless yet an attending physician urged us onward, interns and residents mumbled their frustration, but no one dared to object. The focus was on staving off death for as long as possible.

  Throughout my training, I responded to numerous cardiac arrests, or “code blues.” When “code blue, code blue, room such-and-such” blared from the loudspeakers, I dropped what I was doing and rushed to assist. When it was over, I’d return to the task the code had interrupted and move on, as if nothing momentous had happened. I might even have eaten a sandwich—as an intern and resident, I often ate on the fly.

  I had few role models to teach me how to talk with a dying person, how to present treatment options, how to know when to stop treatment, and how to help the patient let go of life. In general, my instructors did a poor job of confronting death and dying; we had no lectures about end-of-life issues. If a patient died, you had somehow failed. When a doctor had to tell someone that no further treatment would extend or improve the quality of life, he or she was often cold or brusque. That brusqueness often wasn’t hardheartedness but masked deep feelings of failure that they were repressing. Still, at the worst moment in their lives, patients rarely got any display of warmth, like holding a hand, giving a hug, shedding a tear, or telephoning a few days later to demonstrate concern. Our instructors frowned upon touching a patient in this way, deeming it unprofessional.

  When I was an intern, one of the attending family physicians introduced the concept of “orthonasia,” a term he’d invented for the management of a dying patient. In euthanasia you take an active role in ending a person’s life, an idea that violates the original Hippocratic Oath (“Nor shall any man’s entreaty prevail upon me to administer poison to anyone”), though the abridged “modern-day” oath I took during my graduation ceremony does not address it directly (“The health of my patient will be my first consideration”). According to my mentor, orthonasia meant you did nothing but let nature take its course. The concept seemed logical to me—but someone had to present that idea to the patient or the patient’s family. Since in this case the patient wasn’t my mentor’s patient, the discussion, while thought-provoking, remained hypothetical.

  During my residency, one death haunted me. It occurred on a rotation in the intensive care unit. The patient, a middle-aged man who had some form of leukemia, had failed to respond to therapy. One of the chemotherapy drugs blistered his gastrointestinal tract, from mouth to anus. Blood oozed from every orifice. Unable to breathe because of the disease, he’d been placed on a ventilator. Conscious despite large doses of sedatives, he begged to stop all treatments. But his doctor, an oncologist, wouldn’t let go. In a state of denial, she believed that his life could be saved; nothing would dissuade her. His death struck me as among the most miserable and agonizing I’d ever seen. I vowed never to be the type of doctor who refuses to respect the wishes of a dying patient.

  At this time in my career, the hospital patients I cared for who died weren’t my patients or my responsibility. The attending physician decided the course of care; I implemented the orders. Mrs. Cook was different. She was my patient and my responsibility. I’d spent months getting to know her and had developed a relationship with her. As she wished, I’d become her friend as well as her doctor. As her friend, I avoided the topic of death so as not to upset her; as her doctor, I neglected to engage her in a meaningful discussion of her mortality. I didn’t ask whether she wanted to be resuscitated if her heart stopped or whether we should eschew artificial life support and ease her into death wi
th a pain reliever like morphine. I kept putting off the discussion for another day, the time never seemed right, and she avoided the subject too, except in passing, as if it were a joke. Just as when she mentioned sex, I squirmed with discomfort at the thought of having a heart-to-heart talk about her death. In this regard I was no better than the oncologist I disapproved of. It wasn’t that I failed to respect Mrs. Cook’s wishes; I just didn’t bother to find out what they were.

  Her daughter called me to give me the news. I expressed my condolences and told her how much I liked her mother. I was sorry I couldn’t have done more for her, I said. She replied that her mother’s death was a relief and a blessing, and she thanked me for my attentive care and making her mother’s final days a bit brighter.

  For me, Mrs. Cook’s death marked the first cairn in a long line of cairns up a professional mountain. She was the first patient I lost after starting my private practice. Because she died at home in her sleep, I’d managed to skirt the big issues. The next time, and other times after, it might not be so easy. I knew even at that early point in my career that if I was going to become a more effective physician, I had to do more than diagnose and treat illnesses. I had to learn how to confront death.

  : 3 :