The Repudiation of Victimhood
So-called noncompliance—of patients who don't take their medicine, as well as research subjects who don't follow the protocols—is a long-standing concern among medical professionals. But preoccupation with the issue has skyrocketed in recent years. In one study of the medical literature, Ivan Emke was able to find only 22 articles published in English on the topic of compliance before 1960. But "by 1978, 850 more had been published. Between 1979 and 1985, another 3,200 articles on compliance were published." Noncompliance has become a catchall category for things patients do that health providers find undesirable—a term that casts as much light on doctors' expectations as it does on patients' behavior.
As Emke has noted, doctors tend to discuss what they call the "problem of noncompliance" as if it were purely an individual issue involving specific troublesome patients. But as far back as the Popular Health Movement of the 1830s and 1840s, noncompliance has also appeared in "organized" forms. The feminist health movement of the 1970s and 1980s is, in Emke's words, "the clearest modern example": "It represents more than simply a questioning of the medical orthodoxy, but also involves the setting up of alternative clinics, the support of unique therapies, and the democratization of medical knowledge." The consequences of organized noncompliance for professional authority are suggested indirectly by an observation made by Eliot Freidson, the influential sociologist of medicine and the professions, who, writing in the 1960s, assumed there was a general absence of such organization among medical patients. Professional authority cannot function as such, said Freidson, unless "its clientele is a large, unorganized aggregate of individuals, leaving little possibility for the exertion of lay pressure to compromise occupationally preferred standards."
"Noncompliance" is a vague term, emphasizing what patients don't do, rather than what they do. It also suggests a zero-sum game, as if AIDS patients and their doctors had no interests in common. In practice, the relationship between patients with AIDS or HIV infection and community doctors has often been a close one—particularly in gay communities where the doctors themselves are sometimes gay and, in not a few cases, are also infected with HIV. Rather than speaking of noncompliance, it might be more accurate to describe a series of shifts in the nature of the doctor-patient relationship, accompanied and often
fueled by an unusual medical sophistication on the part of the patients.
As the extensive literature on the "doctor-patient relationship" suggests, there are many different models of such relationships. The doctor might be conceived as omnipotent or as simply an adviser to the patient. The patient might be imagined to be an inert object (as in surgery) or a competent decision maker (as in many chronic illnesses). But as professional ethics have changed in recent years, and as the balance of power in the doctor-patient relationship has shifted, doctors have been increasingly inclined to acknowledge the full subjectivity of their patients.
AIDS patients have encouraged this cultural shift. Like their feminist predecessors, people with AIDS practiced "self-help with a vengeance," as Indyk and Rier have nicely characterized it —an outright rejection of medical paternalism and an insistence that neither the medical establishment nor the government nor any other suspect authority would speak on behalf of people with AIDS or HIV. In 1985, groups of patients issued a "Founding Statement of People with AIDS/ARC" and a "Patient's Bill of Rights," which have been widely reprinted. The "Founding Statement" asserted: "We condemn attempts to label us as 'victims,' which implies defeat, and we are only occasionally 'patients,' which implies passivity, helplessness, and dependence upon others. We are 'people with AIDS."' People with AIDS insisted not only on their right to self-representation but also on the right to full explanations from health professionals, the right to anonymity and confidentiality, and the right to refuse specific treatments. Decision-making power, ultimately, had to reside with the person whose life was on the line. This was not an assumption to which doctors necessarily were averse, but the ingrained culture of professional practice often tended to militate against it. At a 1988 conference on AIDS held in London, an anthropologist held up two books side by side to illustrate the gap in perceptions: one was called AIDS: A Guide for Survival , the other, The Management of AIDS Patients . (Only two years later, as the balance of power and knowledge between doctors and patients shifted, AIDS Treatment News would publish an article for patients advising them how to go about "Managing Your Doctor." )
In explaining the medically "noncompliant" tendencies of groups like gay men and injection drug users with AIDS, some have emphasized their alienation from society: outcasts can be expected to rebel.
Others have stressed the desperation of those confronted with imminent death. Yet for many people with AIDS, having the capacity to challenge their doctors over the terms of their medical treatment may stem less from their oppression or desperation than from their relative social advantages. Barrie R. Cassileth and Helene Brown have made a similar point about cancer patients who pursue alternative therapies: "Contrary to the stereotype, … patients who seek unproven methods include the educated, the middle to upper class, and those who are not necessarily terminal or even beyond hope of cure or remission by conventional treatments." Such patients are overrepresented because "several features of these [alternative] cures require time, financial resources, and an educated, questioning approach to illness.…"
Similarly, many people with AIDS and their friends, lovers, and families are often equipped with the financial and cultural resources that permit them to reverse the unidirectional flow of power in the traditional doctor-patient relationship. Many are highly educated (though very often not in the hard sciences), highly motivated, and willing to work to learn the foreign language of biomedicine. "An offensive strategy began to emerge on the island of [hospital room] 1028," reported Paul Monette, in a memoir describing his lover's death, "especially as I took an increasingly hands-on role, pestering all the doctors: No explanation was too technical for me to follow, even if it took a string of phone calls to every connection I had. In school I'd never scored higher than a C in any science, falling headlong into literature, but now that I was locked in the lab I became as obsessed with A's as a premed student. Day by day the hard knowledge and raw data evolved into a language of discourse."
One New York doctor described the results of such autodidactic strategies as he witnessed them with his patients: "You'd tell some young guy you were going to put a drip in his chest and he'd answer: 'No, Doc, I don't want a perfusion inserted in my subclavian artery,' which is the correct term for what you proposed doing." In the eyes of some doctors, these were "bad" patients—troublesome know-it-alls who presumed to tell the doctor what to do. But others appreciated patients who took such an energetic interest in their own treatment. The emerging partnerships between patients and health practitioners—and more generally, the expanding expertise residing in gay communities—would hold profound consequences for the politics of knowledge-making in the coming years.