by Michael Stein
Beatriz always smelled of cherries and had a slow, coy smile. By the time I saw her that August, on an afternoon when the summer sun coming through the window at the far end of my exam room made me feel badly for the withered plant on the sill and for the fact that I still hadn’t bought curtains, I had been caring for her for three years. I had cared for thousands of HIV patients like Beatriz. I had seen, close-up, the greatest medical achievement of my generation—the conversion of a fatal disease into a chronic one. I had watched the life expectancy of a person with HIV who faithfully took his or her daily medication grow until it had become approximately the same as that of a person without HIV. I had seen, too, that without medication (or without the correct use of medication), all survival bets were off. Beatriz’s medication use had been erratic, and for three years I had been patient with her about this. But that August day I showed my frustration, and I am still trying to understand why. The restraint that had enabled me to override my instinctual response to her self-destructive behavior had run out. But what is self-control between doctor and patient, and how does it “run out”? The unspoken contract a doctor makes with his patients implies that whatever self-control is, doctors can’t let it run out, because when it’s gone, unkindness erupts.
I hadn’t given Beatriz the results of her HIV test, but I was the first doctor she saw after learning of the diagnosis. I remember, at our first visit, how slowly she moved. Although she was only thirty-seven, it was as if she lacked adrenaline. I couldn’t imagine her running or even moving fast. She seemed to collapse into the thin metal chair in my office; her neck naturally tipped her chin to her chest, and she spoke softly, looking at the floor.
Her daughter, Dahlia, came to this first visit with her Barbie dolls. She sat them on her chair and kneeled on the dirty linoleum floor, silently mouthing advice and instruction, her back to the examining table where her mother sat. She had her mother’s soft brown eyes and mocha skin.
I asked Beatriz who knew about her test results. No one except her husband, she said, the only man she’d been with, the one who had infected her with HIV and who lived with her sometimes, the guy with long stringy hair and sharp teeth I’d seen in the waiting area reading a magazine standing up. She wanted to keep it that way. She hadn’t told her sister, who lived in town. She hadn’t told her mother, a thousand miles away in the Dominican hills of Cibao, who was dealing with her own diabetes. She hadn’t told her best friend, who’d been urging her to leave her husband for years anyway. If anyone found out about her HIV, there would be humiliation, guilt, embarrassment. There was the risk of their fear, blame, unkind words, the possibility of withdrawal, and a refusal and unwillingness to help. While she might find some support, she didn’t expect any. Beatriz turned down my suggestion to speak to a counselor, as this would mean the revelation of her secret to another person, and I was concerned about her isolation.
I found myself speaking in code at that first visit, not using the acronym “HIV” in front of Dahlia, who at four wouldn’t have understood if I had. Beatriz and I never used the acronym in the office in front of Dahlia. It became part of the contract between us.
There are enigmatic illnesses whose prognoses are uncertain, in which well-being comes and goes unpredictably; they are medical stories with unfathomable plots. Where the story is variable, I share with my patient every conceivable possibility. I am soft in my approach, because for the patient, not knowing what will happen and what to expect is a kind of pain itself. And then there are illnesses with predictable paths and trajectories, and I can talk about upcoming events and confidently offer my experience. I am harder-voiced, less tolerant; my sympathy depends on the patient’s willingness to follow my recommendations, because here the illness is controllable, and I want the patient to be as well, for her own good. HIV was this form of illness.
My recommendation to Beatriz early on was to start treatment. Using our code, we called them “pills,” not HIV medications, not medicines to prevent the progression to AIDS, and by our third visit, Beatriz had agreed to begin.
I saw her every three months to monitor lab work, which indicated if her virus was under control, and to see how she was doing. Beatriz was a small woman, who carried an enormous canvas shoulder bag that held a sweater—she was always cold—and a book for her daughter, snacks, and tubes of skin lotion, keys, bracelets, and Kleenex. Dahlia still came to every appointment with her Barbies. She found new places in the room for her dolls to visit. Sometimes she sat them on the large slate windowsill that looked out over the city, or she disappeared into the corner behind the exam table. Sometimes she carried them to the small metal sink, pulled over the chair to stand on, and washed their hair.
Beatriz and Dahlia were obviously close, but they never interacted much in the office. From the first visit, there seemed to be an understanding that this was Mama’s time, not to be interrupted. Dahlia never asked me or her mother a question. She always pranced into the room in front of her mother as if it were her appointment, and then she disappeared into her silent play, silent as a cat. Beatriz and I sometimes spoke in Spanish, which was easier for her than English, and she got to correct my mistakes. But she liked to practice her English, which she believed she should have spoken better, given that she’d lived in the US for more than a decade. Dahlia spoke both languages perfectly and looked up at me when I mispronounced or mis-conjugated, and then, teacher’s helper, looked over at her mother, who was already tsk-ing me into improvement, her one sign of liveliness. Seemingly absorbed in play, the child missed nothing.
From the first month after beginning anti-HIV therapy, Beatriz admitted to missing doses. When I tried to understand why, she yawned to make clear that her life was tiring and every dose was an effort, and that my questions, after a certain point, tired her. She claimed that she understood the importance of taking the pills correctly, although she didn’t promise to do better. Patients tell me that my eyes almost never betray any emotion except for disappointment. Beatriz must have known that I was disappointed.
Beatriz’s admission that she was missing pills was reasserted every three months. “I forget. I don’t keep them with me,” she said. I warned her at every visit that forgetting to take her pills two or three days a week would get her in trouble, that her condition would only be held in check by close adherence to a pill schedule. I’d told her that her body needed a constant, regular level of medication, water on a fire, to keep the problem under control. I’d told her how her disease gained power when she missed doses. How the disease would grow stronger and the medication would lose its potency and we would run out of options. Her good health depended on control of the problem, which depended on this medication adherence.
Beatriz had a special kind of sadness, asking for little, and thanking me for nothing. Every three months she returned to report the same difficulty with her pills and I would sit on my rolling chair and try to get a sense of why she wasn’t fully compliant and why she kept coming back to tell me the same thing. But I looked forward to seeing how Dahlia had grown, and Beatriz’s passivity kept me attentive; I kept trying to come up with new memory devices to improve her pill-taking, hoping that it was simple forgetfulness.
On one visit, she accepted a pillbox from me. At the next, when she admitted that she forgot to fill it, I preloaded twelve pillboxes in my office, one for each week until our next meeting. Still missing doses by the following visit, we discussed ritualizing the event, putting the pillbox or pill bottles next to her toothbrush, where she was sure to go twice a day. She rarely left the house. She cleaned, she sewed her daughter’s dresses, and she cooked the standard Dominican starch and fried food diet that could slow anyone for two hours after a meal. Could she take her pills with desayuno y cena? She had tried setting an alarm to remember her evening dose.
I thought of engaging her husband. He nodded at me from across the room whenever I escorted her out to the waiting area. He was a part-time mechanic and sold prescription pills to addicts for his real income. As far as I knew, he’d never hit Beatriz. He took Beatriz’s arm when they walked to the elevator. Dahlia held his hand and tried to skip, tried to tug the two of them along. He was clearly involved with his family, but Beatriz didn’t want to ask for his help when I suggested it. She smiled her pained smile, as if there was nothing she could do to help me or herself.
We had established a lousy pattern. I would scold, and Beatriz would shrug or monosyllabically rationalize missing her pills. I was never sure what she was thinking. When she arrived in August, there was evidence from her blood work three months earlier, and from her February report three months before that, that she was missing so many doses that her virus was now dangerously out of control. I was exasperated with her. Getting her to change her behavior seemed hopeless and no longer worth the effort. This thought made me feel incompetent and empty and defeated.
I count on a professional life of self-control; all doctors do. Doctors are always overriding hardwired responses like fear or disgust with the sights and smells of a clinical schedule in order to get through the day.
There are three ways of thinking about self-control. One model views it as a skill. As with any learned skill, self-control remains roughly constant when applied over time—across an afternoon of seeing patients, for instance, where I keep my worst thoughts to myself and do not blurt out something that could be hurtful or insulting.
A second model envisions self-control as a brain system that remains in stand-by mode until it is pressed into action. Once activated—when, for instance, I first step into my office and am primed by the first patient of the day—the system of good and controlled behavior remains in operation for a time, making further acts of self-control easier.
A third model imagines that self-control resembles energy. In this view, an act of self-control—with a patient, or even in a non-medical domain, such as an argument with my son before work—involves a kind of exertion that expends energy and thereby depletes the supply available for the next experience. Unless the supply is very large, initial acts of self-regulation should deplete it, impairing subsequent self-control. In this third model, adapting to any stress may involve a “psychic cost,” and one stress makes the next one more likely. In all three models, self-control is an unconscious function that is automatically performed.
Researchers have tested these three models by asking volunteers to engage in an initial self-controlling activity and then testing their self-control during a subsequent activity. For instance, one group of volunteers is asked to watch a funny movie clip. The experimenter tells the participants they will be videotaped while watching the film, and so it is essential to try to conceal and suppress any emotional reaction (an act of self-control). Meanwhile, a second group of volunteers is instructed to let their emotions flow while watching the clip, without any attempt to hide or deny these feelings, no self-control required. Both groups watch ten minutes from a Robin Williams movie. (The same experiment has been done with a sad clip from Terms of Endearment.)
After the movie, the same volunteers are asked to help the experimenter collect some preliminary data for “future research,” a ruse to conceal the purpose of the second self-control task. This task is an anagram game, unscrambling sets of letters. The anagrams require effort; success requires some degree of self-control, dealing with the frustration of the difficult game. Assuming that before the experiment both groups would have, on average, a roughly equal ability to do anagrams, the three models of self-control would have different predictions about anagram performance after the movie. The energy model would predict that the volunteers who controlled themselves during the movie would have poorer anagram performance than the others because their self-control would be depleted; they wouldn’t try as hard or concentrate as well, their focus exhausted.
There have been hundreds of experiments using this experimental design—some engagement of self-control followed by a second task requiring self-control—and the model of the psychic cost of the initial use of such self-regulation has been supported repeatedly. Restraint, it seems, is based on some limited capacity, such that engaging self-control quickly consumes it, leaving one in a depleted state. Some valuable resource of the self is depleted by an initial act of volition and discipline; further attempts of self-control are prone to failure. How long this exhausted state lasts, and how long until one’s energy recovers, is highly individual and uncertain.
That August day, Dahlia wore flowered shorts. She’d taken out her Barbies and disappeared into their world like any other day, moving them from hiding place to hiding place. I was sitting on my rolling seat, sweating. I could see that the convertibles on the highway had their tops down, and the sun’s glare made me squint at Beatriz, who reported that she’d had diarrhea for a month, the predictable, inevitable story of uncontrolled HIV. I’d gotten her latest blood test results back. They were getting worse, and I was upset.
She was sitting on the examining table when I asked loudly, “Are you daring your HIV to kill you?” Her legs made a sharp movement, and she was suddenly standing. I could see the sweat tracks her thighs had left on the paper. I had never seen her move quickly. Her head swiveled, checked the corners of the room. Where was Dahlia?
Beatriz looked at me with panic and disappointment. I had disappointed her. She had asked me for exactly one thing in three years: to never say “HIV” or “AIDS” in front of Dahlia, and that’s exactly what I’d done.
Dahlia came out from the small space behind the examining table. Her eyes were filled with tears. She’d heard me say “HIV.” She was seven, but she knew about HIV. She knew her mother would die.
I’d said three letters, and I had irreparably changed the relationship of mother and daughter. Embarrassment and regret, like a heavy hot towel slapped down on my face, reddened my jaw and cheeks.
Beatriz grabbed her shoulder bag, told her daughter to get her things, took Dahlia’s hand, and pulled her out the door.
I saw the patient scheduled after Beatriz, and the one after that, and the one after that, as if continuing to do my job and completing some evaluable quantity of visits would erase my mistake. My throat ached. My head was a globe of screaming nerves. Why hadn’t I been able to restrain myself? I have been thinking about Beatriz and trying to understand my capacity for self-control ever since.
At every other visit, I had been able to resist the impulse to be brutally honest with Beatriz. I had never expressed my anger about her lousy pill-taking or told her not to come back until she took better care of herself. I had never said things that would have been easy to say, because I knew it would carry a long-term cost and violate the rules and guidelines of the contract I made with my patients. Back then, I told myself I hadn’t been paying attention, I’d forgotten Dahlia was in the room, but it was not an adequate explanation. It suggested that I was inattentive, or distracted, or suffered from memory lapses. I was letting myself off too easily.
So does the depletion model explain what happened to me with Beatriz on that day? If self-control always has limits, had I been depleted by the patient I’d seen before Beatriz’s appointment? Was I unable to override the natural impulse to shock her into pill adherence because my self-regulating strength had deteriorated? I would like to say that I was exhausted that day from a long night on call. I would like to attribute my loss of control with Beatriz to the hard work of caring for a difficult patient who’d come in earlier that day, or a fight with my wife on the phone, or an argument with a staff member in the hall over missing supplies in the hour before Beatriz arrived. But I couldn’t think of anyone or anything to blame but myself.
I do remember feeling a kind of depletion when I saw her that day, however. Or rather, fatigue, boredom, disappointment, and anger, the emotions of depletion. But then what, or who, had depleted me? There was no other person, or event, or activity, that had sapped my control. It was Beatriz. Beatriz, who was now symptomatic from her HIV after three years of taking her medication incorrectly. Beatriz had exhausted me. I had a kind of Beatriz-fatigue.
Or perhaps it was not that I was depleted. Perhaps, at that August visit, my motivation had shifted. My usual “ought-to” goal (be nice) changed to a “have-to” goal (be honest, that is, be angry), and the expression of my “have-to” goal was to be confrontational, to yell, and be careless. It felt meaningful and right to accuse her of poor self-care in the service of creating the possibility of a greater reward: Beatriz would finally change. I hadn’t really lost control. I had less control than I’d had at past visits with her, but I still had some control; I had, after all, calmly taken a history of her symptoms. It wasn’t that I couldn’t control myself, it was that I didn’t want to control myself. My relative depletion (from her admitted non-adherence at every previous visit) stoked my desire to be harsh because I wanted to be harsh that August day. That’s what I believe today.
It was strangely gratifying to lose control on that day in August. I yelled suddenly, unexpectedly, easily. My yelling was not a matter of inattention or distraction. It was enjoyable; it felt good; I must have told myself it was for her good. Yelling, unfortunately, disastrously, included the word “HIV,” which I had promised never to say.
When we say that to become a doctor is to join a respected profession, we mean that a doctor, during his workday in the hospital or office, is assured of authority. By completing medical school, he has put himself in a position in which authority—knowing how the body works, having the ability to fix it—over another person, his patient, is (for better or worse) guaranteed. This is a profession where the doctor is the one, after all, who is expected to know, who patients seek out to gain the knowledge they want and need. Doctors have perhaps been drawn to the profession for the security of authority (although publicly we tell the story of helping or caring, which may be true as well, and complementary). This authority, limited in place and time to office hours, is never meant to be threatening—its purpose is teaching and treatment and relief, the benefits of knowledge and experience—but it does create a distance between doctor and patient. This distance must be bearable, and even useful, for both the patient (who must feel able to say anything) and for the doctor (who must exhibit self-control for a greater purpose). Any sense of authority can be undermined, most notably when expert advice is neglected or ignored. When it was undermined, in my case, by Beatriz’s non-adherence, I needed to control myself—and I didn’t.
So perhaps there’s still another version of what happened that day. Maybe what had been depleted was my sense of purpose. Maybe I didn’t want to accept that Beatriz wouldn’t listen to me. She’d come to me for my experience and expertise, and then she’d gone ahead and made her own decisions for three years. She’d taken up my time, and I expected some respect for my advice in return. As each three-month visit approached, I would think again about why she was non-compliant, and what it was that she really wanted from life. The reasons for missing pills almost didn’t matter. There was shame about her illness, true forgetfulness, fatalism, magical thinking (missing pills meant she didn’t really have HIV), an inability to find the inner resources, the self-control, necessary to take pills for the rest of her life. There were a million possible reasons.
Did I really forget that Dahlia was there? I still ask myself. Was that possible, even if she was invisible, out of sight with her Barbies behind the examination table? Or did I unconsciously mean to use to Beatriz’s daughter against her? Did I unconsciously want Dahlia to pop up and ask her mother to do better, to live longer? Would it have been any better if I had yelled what I had when her daughter wasn’t present, if I’d sent her daughter from the room beforehand? Was my trespass worse because Dahlia was present, because I was forcing Beatriz to face her selfishness and look at her daughter?
Anger is a judgment. Did I have a right to judge Beatriz? A doctor’s kindness means more than bearing a patient’s vulnerability, sharing in it imaginatively. It means getting rid of that vulnerability, yanking the patient out of it when you can. That was my job, especially in matters of life and death. Kindness is a form of respect, but medical care requires action. I couldn’t share Beatriz’s vulnerability any longer.
I needed her to be perfect with her pills, but I was imperfect with my words. Although I was full of care, I was careless. I indulged myself, I faltered, I tried to humiliate her, and I was memorably unkind. Kindness is prone to collapsing, to falling apart. It should be easy in the practice of medicine; the foundation of kindness is dependence, and the patient needs you. I understood Beatriz’s consistent non-adherence as a sign that she didn’t need me. Compassion is easiest with those who return the favor.
Her understanding of our silent contract, set early in our relationship, included three clauses: don’t mention HIV in front of my daughter; I’m going to be non-adherent with my medication; I will continue to come see you. I tried to change the contract. Hoping for a different, longer life for Beatriz, maybe I was the one with the magical thinking.
Published on July 12, 2016