Faculty Bibliography

The advent of triple-drug therapy for HIV disease has raised the concern that disadvantaged patients with multiple social problems may be nonadherent to treatment. Fearing that partial adherence will lead to drug resistance, some clinicians are withholding these powerful new drugs from such patients. The historical record demonstrates that labeling patients as nonadherent may be both stigmatizing and inaccurate. Since 1900, such adjectives as ignorant, vicious, and recalcitrant have been used to describe patients who do not follow medical advice. Less judgmental terms, such as nonadherent and noncompliant, are now used, but these terms still imply that patients should obey physician-imposed regimens. Studies of nonadherence have consistently shown that the problem is widespread among all persons and cannot reliably be predicted on the basis of patient characteristics. This paper argues that physicians should deemphasize the standard approach of predicting and correcting nonadherent behavior in certain patients. Rather, clinicians should encourage all HIV-positive patients to devise individualized treatment plans that can facilitate reliable ingestion of medication. Although the potential development of resistance to triple-drug therapy remains an important public health issue, concern about this possibility must be balanced with respect for patients' rights. Encouraging the active participation of HIV-positive persons in their own treatment will help avoid judgmental and inaccurate assessments of patient behavior and may help patients take medications more successfully.

Thousands of articles on "noncompliance" have appeared since 1975. Yet the term has been criticized as paternalistic--as wrongly implying that patients should necessarily follow doctors' orders. This paper, which reviews how noncompliance has been constructed historically, argues that the problem with noncompliance is more than just one of terminology. Changing social and cultural factors during the 20th century have influenced the way in which uncooperative patients have been described. For example, resentment of poor immigrants in the early 1900s led doctors to describe tuberculosis patients who did not follow advice as "ignorant" and "vicious." Following World War II, patients who balked at taking new curative antibiotics for tuberculosis were called "recalcitrant." The term "noncompliance," popularized by Sackett and Haynes in the 1970s, reflected their early role in the field of research now termed "evidence-based medicine." While Sackett and Haynes had hoped that the new term would eschew earlier value judgments, noncompliance, through its association with the positivistic ethos of evidence-based medicine, has been conceptualized as a "tragic" problem potentially solvable by clinical research. Hence, noncompliant patients are still seen as deviant. With the growth of managed care in the United States, there is increasing pressure to get patients to follow medical recommendations. History suggests that labels such as "noncompliant" are invariably judgmental. Rather than seeing the provider's role as trying to get noncompliant patients to comply, we should emphasize the importance of negotiation and accommodation within the provider-patient relationship.

BACKGROUND: Poor adherence to antituberculosis treatment is the most important obstacle to tuberculosis control. PURPOSE: To identify and analyze predictors and consequences of nonadherence to antituberculosis treatment. PATIENTS AND METHODS: Retrospective study of a citywide cohort of 184 patients with tuberculosis in New York City, newly diagnosed by culture in April 1991-before the strengthening of its control program-and followed up through 1994. Follow-up information was collected through the New York City tuberculosis registry. Nonadherence was defined as treatment default for at least 2 months. RESULTS: Eighty-eight of the 184 (48%) patients were nonadherent. Greater nonadherence was noted among blacks (unadjusted relative risk [RR] 3.0, 95% confidence interval [CI] 1.1 to 8.6, compared with whites), injection drug users (RR 1.5, 95% CI 1.1 to 2.0), homeless (RR 1.4, 95% CI 1.0 to 1.8), alcoholics (RR 1.4, 95% CI 1.0 to 1.9), and HIV-infected patients (RR 1.4, 95% CI 1.1 to 1.9); also, census-derived estimates of household income were lower among nonadherent patients (P = 0.018). In multivariate analysis, only injection drug use and homelessness predicted nonadherence, yet 46 (39%) of 117 patients who were neither homeless nor drug users were nonadherent. Nonadherent patients took longer to convert to negative culture (254 versus 64 days, P < 0.001), were more likely to acquire drug resistance (RR 5.6, 95% CI 0.7 to 44.2), required longer treatment regimens (560 versus 324 days, P < 0.0001), and were less likely to complete treatment (RR 0.5, 95% CI 0.4 to 0.7). There was no association between treatment adherence and all-cause mortality. CONCLUSIONS: In the absence of public health intervention, half the patients defaulted treatment for 2 months or longer. Although common among the homeless and injection drug users, the problem occurred frequently and unpredictably in other patients. Nonadherence may contribute to the spread of tuberculosis and the emergence of drug resistance, and may increase the cost of treatment. These data lend support to directly observed therapy in tuberculosis.

The increasing emphasis in medicine on treating the whole patient has focused attention of the association between emotions and disease. However, physicians have long studied the connection between mind and body. One particularly interesting researcher in this area was Thomas Holmes, a charismatic and iconoclastic Seattle physician who studied the association between stress and tuberculosis in the 1950s. Although lacking the sophistication of modern biostatistics, several of Holmes' studies suggested that persons who had experienced stressful situations, such as divorce, death of a spouse, or loss of a job, were more likely to develop tuberculosis and less likely to recover from it. Holmes consciously used the same scientific methods as his peers, devising a numeric scale that quantified stressful events and doing prospective studies with control groups. Yet, he also emphasized the need to understand each patient's story and to view his or her tuberculosis as the culmination of a life of emotional hardship. Although Holmes' work was rudimentary, his basic supposition may have been correct. Recent research, benefiting from advances in both immunology and biostatistics, suggests that stress may lead to decreased immune function and thus to clinical disease. As studies of stress and disease become more statistically sophisticated, it will be important to retain Holmes' emphasis on understanding the lives of individual patients.

Repeatedly noncompliant tuberculosis patients (who are often homeless or substance users) are once again being forcibly detained. Health officials intend that confinement be used only when "less restrictive alternatives" have failed. Past programs of detention can inform current efforts. In 1949, Seattle's Firland Sanatorium established a locked ward. Although initially intended only for active public health threats, the ward was eventually used to maintain order among Firland's alcoholic patients. That is, the staff detained alcoholics--regardless of their infectivity or compliance with medications--for breaking sanatorium rules. In this manner, maintaining institutional order became a legitimate reason for invoking public health powers. Although new detention regulations strive to protect patients' civil liberties, attention must also be paid to the day-to-day implementation of coercive measures. When public health language is used to justify administrative or institutional requirements, disadvantaged patients may be stigmatized.

The publication of Derek Humphry's Final Exist in 1991 caused a large uproar. Although designed as a suicide manual for terminally ill persons, there has been considerable fear that the book's methods might be used by others, such as nonterminal elderly individuals who have made a "rational" decision to end their lives. This piece, a short story about an elderly couple that commits double suicide, explores rational suicide by using fiction, as opposed to a standard bioethical approach. Fiction does not provide answers, but rather highlights the ambiguities surrounding elder suicide, and reminds us to evaluate this issue in the context of individual life experiences.