Opportunities not taken: successes and shortcomings in the Institute of Medicine's report on organ donation.

The Institute of Medicine's recent report, Organ Donation: Opportunities for Action, studies the current problems facing organ donation in the USA, making suggestions for quality improvement and analyzing various proposals of incentivized donation and presumed consent (PC). Although the report deals with the donation of several solid organs, this mini review examines the findings from the perspective of kidney transplantation. The committee's recommendations to move from circulatory to neurologic criteria for cadaveric donation and to increase opportunities for donor decision making are prudent. We agree with the committee's arguments against providing incentives for donation because of the inherent distributional inequalities and imperfect information; the intrinsic difficulties in establishing market equilibrium for such heterogeneous and perishable goods; the implied commoditization of the human body; and the inadequate data regarding the long-term risks of living donation. However, we question the committee's firm opposition to PC, especially given recent data from 22 European countries showing a 25-30% increase in organ supply attributable to a PC policy. If this simple change in the default position on donation has the potential to increase organ supply, decrease the need for living donation, reduce the burden on grieving families, maintain familial authority over the deceased, and respect patient autonomy, at least a pilot program of PC seems warranted.

Revisiting the death of Eleanor Roosevelt: was the diagnosis of tuberculosis missed?

Controversy has surrounded the death of Eleanor Roosevelt in 1962. There has been a persistent sense that doctors missed the diagnosis of miliary tuberculosis, thereby jeopardizing her life. This article, using Roosevelt's medical chart and other previously unreviewed documents, revisits her illness and death. What disease actually killed Eleanor Roosevelt? Did her physicians miss the diagnosis? These questions are of particular importance in light of the recent Institute of Medicine report estimating that almost 100,000 Americans die each year from medical mistakes. Why has the possibility of error clouded the care of Roosevelt for almost 40 years? What can Roosevelt's case reveal about ongoing efforts to reduce mistakes in clinical practice?

From Laennec to lobotomy: teaching medical history at academic medical centers.

Although clinicians without a sense of history may not be condemned to repeat the past, the historical record offers many informative lessons. For one thing, history demonstrates the changing nature of scientific knowledge; current understandings of health and disease may prove as ephemeral as earlier discarded theories. In addition, history reminds us that social and cultural factors influence how physicians diagnose and treat various medical conditions. When attempting to teach the history of medicine at academic medical centers, instructors should be innovative as opposed to comprehensive. Students and residents are likely to find recent historical issues to be more relevant, particularly when such material can be integrated into the existing curriculum. Provocative topics include depictions of medicine in old Hollywood films, the contributions made by famous physicians at one's own institution, and historical debates over controversial events, such as the Tuskegee syphilis study and the use of lobotomy in mental institutions in the 1950s.

Great expectations: historical perspectives on genetic breast cancer testing.

Women who test positive for a genetic breast cancer marker may have more than a 50% chance of developing the disease. Although past screening technologies have sought to identify actual breast cancers, as opposed to predisposition, the history of screening may help predict the societal response to genetic testing. For decades, educational messages have encouraged women to find breast cancers as early as possible. Such messages have fostered the popular assumption that immediately discovered and treated breast cancers are necessarily more curable. Research, however, has shown that screening improves the prognosis of some--but not all--breast cancers, and also that it may lead to unnecessary interventions. The dichotomy between the advertised value of early detection and its actual utility has caused particular controversy in the United States, where the cultural climate emphasizes the importance of obtaining all possible medical information and acting on it. Early detection has probably helped to lower overall breast cancer mortality. But it has proven hard to praise aggressive screening without exaggerating its merits. Women considering genetic breast cancer testing should weight the benefits and limitations of early knowledge.

Catching patients: tuberculosis and detention in the 1990s.

The resurgence of tuberculosis (TB) in the early 1990s, including multidrug-resistant strains, led health officials to recommend the use of involuntary detention for persistently nonadherent patients. Using a series of recently published articles on the subject, this paper offers some opinions on how detention programs have balanced protection of the public's health with patients' civil liberties. Detained persons are more likely than other TB patients to come from socially disadvantaged groups. Health departments have generally used coercion appropriately, detaining patients as a last resort and providing them with due process. Yet health officials still retain great authority to bypass "least restrictive alternatives" in certain cases and to detain noninfectious patients for months or years. Misbehavior within institutions may inappropriately be used as a marker of future nonadherence with medications. As rates of TB and attention to the disease again decline, forcible confinement of sick patients should be reserved for those persons who truly threaten the public's health.

Rethinking nonadherence: historical perspectives on triple-drug therapy for HIV disease.

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.

From careless consumptives to recalcitrant patients: the historical construction of noncompliance.

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.

Nonadherence in tuberculosis treatment: predictors and consequences in New York City.

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.

Can stress cause disease? Revisiting the tuberculosis research of Thomas Holmes, 1949-1961.

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.

Temporarily detained: tuberculous alcoholics in Seattle, 1949 through 1960.

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.