Unit 5  Section 3 ExerciseStigma
From After the Fall
by Peter Selwyn, Yale University Press
One of my favorite patients was Betty, a thirty-three-year-old Puerto Rican woman whom I first met because she was causing such behavior problems at the methadone clinic that her counselor was ready to terminate her from the program. She was loud, demanding, articulate, and extremely manipulative, and she was an expert at making everyone run around at cross-purposes while she sat calmly in the eye of the storm—an “egg beater,” as we called such patients. It was apparent from the oment I met her that Betty was also smart, funny, suspicious, and, most of all, terrified about her illness and what she feared it would do to her Betty’s ten-year-old daughter, whom she had entrusted to her mother’s care, was starting to show some early signs of preadolscent trouble-making in school.
Betty had also had some recent problems with cocaine use. She was afraid that she might get kicked off the methadone program and have to go back supporting her heroin addiction by working the streets near Hunt’s Point Terminal Market in the southeast Bronx. After meeting together with her counselor and the program administrator, we made a deal: we would write up a contract specifying what behaviors would and would not be tolerated, as well as the obligation of the program to retain her in treatment as long as she complied with her apart of the agreement. It was decided that I would continue to be her doctor—that I would, in fact, be the only medical person she would interact with, to avoid further miscommunication.
This arrangement worked remarkably well over the next several months. Betty’s behavior improved, the frequency of her cocaine-positive urines decreased, and there were fewer complaints about her from clinic staff. One day, however, she became sick. This was in the years before prophylaxis against pneumocystis carinii pneumonia had become standard, and PCP was still the most common illness and cause of death among AIDS patients….Betty had noticed a mild cough for a couple of weeks, along with some progressive shortness of breath. Finally, she was unable even to walk upstairs to get to her apartment or to perform even minimal housework without having to sit down to rest. She was admitted to the hospital with what looked like a classic case of PCP, and after a few days began to respond to the IV therapy. At that point, however, she became more and more angry and abusive with nursing staff, accusing them of withholding her methadone or diluting it, and finding fault with even the most trivial details of the hospital routine. The floor nursing staff, who had not known Betty before she became ill, quickly assessed her as another ungrateful, foul-mouthed drug addict. In the passive-aggressive way hospital staff sometimes react when they don’t like a patient, they began to put up their own barriers against her.
Finally, even these defenses were no longer working, and the head nurse asked me to come up to the floor to speak to Betty. (Your patient,” she emphasized, as if to distance herself even further from Betty’s distasteful behavior.) When I got off the elevator, I was met by a trio of floor nurses, all experienced caregivers, who smiled as they greeted me but could not fully conceal their disgusted conviction that it was somehow my fault that such a patient should exist to make their lives so miserable.
This was a response that I had gotten used to in the hospital. Over the years I had become identified as that doctor in the methadone program who took care of all “those” drug addicts. Being the physician for this large group of drug users meant being tainted by the same negative associations that were directed towards the patients themselves. Although my interactions with nurses and my physician colleagues at the hospital were, in general, excellent, at times I felt that some of them would prefer never to have to deal with me or my difficult and demanding patients again. A friend of mine once told me of a Department of medicine administrative meeting in the hospital, at which someone brought up a problem that occurred in the ER the night before. A drunken and disdheveled homeless patient had shown up and started acting abusively toward the nursing staff. Someone else at the meeting then joked, to everyone’s amusement, “Oh, it must have been one of Peter Selwyn’s patients!”
There was an unspoken double standard in the hospital, which often made it very frustrating trying to schedule certain tests or have procedures performed for patients from the methadone program. On a rare occasion, someone would come right out and declare a hatred for drug addicts or an opinion that they didn’t deserve the best care: the chief of one of the non-invasive diagnostic testing services once told me, in perverse ignorance of basic infection control, that he didn’t want his equipment contaminated by our patients; and a few surgeons refused outright to operate on our patients with AIDS. More often, though, these prejudices were expressed subtly—we were made to feel as though we were begging for crumbs, always having to go to the end of the line.
Of course, it didn’t help when our patients refused to cooperate with a procedure or failed to show up for an appointment that we had pleaded for. These transgressions only served to confirm the hospital staff’s prejudices and left us feeling foolish, caught in the middle. Sometimes it was even worse, like the time I cajoled the staff at the Family Health Center, my former training site, to let me bring over some of my pregnant patients from the methadone program to have sonograms done there. This was before the Family Health Center itself became a major site for providing HIV care in the local community, and the staff members there were still wary because they hadn’t yet seem many drig-addicted patients with AIDS. They finally agreed, but one of the first patients I sent over—Marta—in fact, whom I introduced above—promptly stole a staff member’s pocketbook that had been left in a drawer in the examining room.
On the day that the head nurse had asked me to come speak with Betty, I went to the end of the hall to the single isolation room where she was being kept due to her boisterous behavior. When I opened the door, I found that the drawers of her nightstand had been emptied on the floor and her bedclothes flung wildly about the room. Betty stood by the side of her bed, holding her IV pole like Neptune holding his trident, as if she were daring me to come into the room.
I walked in and asked her permission to sit on the edge of the bed. She launched into a five minute tirade about the injustices she had suffered at the hands of the floor nurses (“I never get my methadone on time, plus they’re cutting it with something. Whenever I call they never come, and this food tastes like they’re trying to poison me, and no one tells me a goddamn thing about what is going on….) My first impulse was to stop her and point out that each accusation she was making was either untrue of explainable by the inscrutable logic of hospital routine. But something made me hold back. I simply sat and listened to what she had to say. After she was finished, she looked at me quizzically , expecting me to respond. I simply looked back at her and nodded, waiting for her to go on.
Betty took a Kleenex box and threw it across the room, exclaiming that she was tired of being treated like a dirty junkie. I nodded again, and she responded by sliding her breakfast tray over the floor, with a clash of silverware, her orange juice spilling into a slowly widening circle on the linoleum tiles. I continued to sit, wordless, simply being present.
Finally, when she had run out of things to complain about, I said quietly, “I think I would be pretty upset, too, if I had just been diagnosed with PCP and was worried about how long I was going to live.” Betty looked at me, and then immediately started to cry, continuing for ten minutes, inconsolably, going through half a Kleenex box, which I had placed back on her bed next to her. When she was finished crying, she looked up at me and began to talk about her real fears of dying, of losing her daughter, of being rejected by her mother’s family. We talked for another half hour while I acknowledged her fears and told her that we would work with her to address them. We also talked about how she would do a lot better and be more likely to get what she wanted if she behaved herself on the unit. On the way out, I told the nurse that I thought thing would start to get better.
Study questions
- What do you make of the observation that the caregiver/physician is tainted by the patients he or she associates with? What causes this?
- Selwyn does not gloss over the fact that many of his patients behave badly: they steal, make unreasonable demands, miss important appointments. Where then, is the error in the attitudes of the doctors Selwyn describes as showing subtle prejudices? How does Selwyn implicitly or explicitly defend his patients?
- What skills does Selwyn exhibit and how do they apply to talking with patients about behavior change?
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