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In the 1980s and early 1990s, New York City experienced an unprecedented outbreak of tuberculosis. Inadequate healthcare services, an increase in social alienation of the poor, and the emergence of drug-resistant strains led city health officials to respond with draconian policies to ensure compliance, including the use of detention of non-infectious individuals--sometimes for up to two years--that violated individual civil liberties. The New York TB epidemic has since been controlled, but this public health triumph has come at great cost. This gripping narrative of medicine and morality raises ethical issues that are of increasing importance in the world of modern medicine. Richard J. Coker warns the international community against assuming a fortress mentality, advocating a more just balance between health, liberty, and the burdens society should be prepared to accept in the pursuit of both.
- Sales Rank: #327968 in Books
- Published on: 2000-02-19
- Released on: 2000-02-19
- Original language: English
- Number of items: 1
- Dimensions: 8.50" h x .75" w x 5.50" l, .98 pounds
- Binding: Hardcover
- 304 pages
From Library Journal
New York City suffered an outbreak of multidrug-resistant tuberculosis in the early 1990s. The disease threatened to expand beyond its usual victims in the homeless, drug-addicted, and incarcerated populations to afflict society at large. The public health system responded with detention and the coercive treatment of individuals who were noncompliant with treatment protocols, and the epidemic abated. Coker, a British physician, examines the social, legal, medical, and ethical issues surrounding this chapter in the history of tuberculosis. He presents historical and epidemiological evidence linking tuberculosis to high levels of institutionalized social inequity. And he shows how the New York City response, while successful in turning the tide of the epidemic, failed to address these root social causes and perhaps even deepened inequities by violating the rights of individuals and providing a smokescreen for the inadequacies in our political and healthcare systems. The book's careful scholarship belies its passion. It is a thoroughly documented and convincingly presented argument that inspires a reassessment of cultural assumptions and reflection on the epidemiological effects of these assumptions. Recommended for academic and larger public libraries and for collections with a focus on the history and sociology of medicine, social justice, human rights, or ethics.
-Noemie Maxwell Vassilakis, Seattle Midwifery Sch.
Copyright 2000 Reed Business Information, Inc.
From The New England Journal of Medicine
Tuberculosis-control workers in the United States may very well be stunned by Richard Coker's assessment of their efforts in From Chaos to Coercion: Detention and the Control of Tuberculosis. After all, the rates of tuberculosis in the United States and specifically in New York City, which is the focus of Coker's analysis, have dropped precipitously since the height of the epidemic in the early 1990s. Yet Coker argues that these accomplishments relied too heavily on the use of coercion, both in the detention of noncompliant patients and in the use of directly observed therapy.
Directly observed therapy, by improving patients' compliance with drug therapy, has been lauded as the key to the recent success of American tuberculosis-control efforts. In programs of directly observed therapy for tuberculosis, health care workers strictly supervise the administration of medications to patients in clinics, in the patients' homes, or on the street. Because so many persons affected during the recent outbreak of tuberculosis had concurrent problems, such as psychiatric illness, homelessness, or injection-drug use, officials involved in the implementation of directly observed therapy have emphasized the need to assist patients with social issues. Indeed, one tuberculosis-control official has even characterized directly observed therapy as TLC (tender loving care). Many patients receiving directly observed therapy have expressed genuine thanks for the attention they have received.
Yet Coker remains wary of this type of program. "Just as coercion may be explicit," he writes, "it may be implied and allied to gentler approaches and other forms of leverage." The success of directly observed therapy with noncompliant patients in New York, Coker argues, rested on the threat of forcible confinement. Thus, directly observed therapy, while couched in patient-centered terms, is in reality the backbone of what Coker calls a "paternalistic, authoritarian system" of public health control.
Not surprisingly, Coker is also strongly critical of the use in New York of actual detention for patients with tuberculosis who remained noncompliant despite interventions such as directly observed therapy. In 1993, in response to a threefold increase in cases of tuberculosis, including several outbreaks of highly lethal multidrug-resistant strains, the city amended its health code, clarifying the power of officials to detain persons with this disease. As in the past, the short-term detention of actively infectious patients with tuberculosis was permitted. But the new code also allowed officials in New York to detain persons who were no longer infectious but were merely completing their course of therapy. As of 1999, the city had detained more than 200 such persons in a special facility, Goldwater Memorial Hospital, for periods of as long as two years.
While acknowledging that New York detained only 1 percent of the patients in the city who had tuberculosis, Coker objects to the way in which decisions about detention were made. Health officials chose to confine patients by predicting who among them would probably not complete drug therapy without such a drastic intervention. But such a calculus, Coker argues, did not explicitly take into account the actual threat to public health that such patients presented -- especially once they had become noninfectious. In a long discussion of the assessment and perception of risk, he contends that there was little science behind the choice of patients for confinement at Goldwater.
As a result, according to Coker, the perception of risk was "value laden." Even though New York officials did not consciously discriminate against poor persons, members of minority groups, drug users, or persons infected with the human immunodeficiency virus, and often enabled such patients to complete their treatment without coercive measures, these were exactly the people who nevertheless wound up at Goldwater. What angers Coker is that the patients who did not comply with instructions for their medications could not have done so. With largely unaddressed problems such as homelessness, psychiatric illness, and untreated addiction, he argues, such patients were never given the opportunity to do what their doctors recommended. "When an option is not made available," he states, "it is impossible for individuals to fail to comply with that option."
Coker builds on this argument in the final chapters of his book, mounting a harsh attack on Western societies that provide inadequate services to the poor and then blame them for their transgressions. He greatly rues the growing rhetoric that emphasizes the duties and responsibilities of individual citizens as opposed to the obligations of society to assist the less fortunate. Indeed, at times the reader almost forgets that this is a book about tuberculosis, as Coker discusses the politics of Bill Clinton and Tony Blair and the consequences of "laissez-faire Thatcherite libertarianism." Yet Coker is absolutely correct to emphasize the connection of politics and economics to the control of tuberculosis, which, after all, has long been a "social disease" primarily affecting the poor.
There are holes in some of Coker's arguments. For example, his claim that we must address society's economic and political inequalities in order to achieve long-term control of tuberculosis has never been proved. In New York, rates of the disease, especially drug-resistant disease, have plummeted, while the social ills affecting the city persist. Although a better standard of living would undoubtedly help to control tuberculosis both in the United States and in the Third World, attempts to use the disease as a wedge to induce social and political change have never worked in the past. In addition, while criticizing recent tuberculosis-control efforts as too heavy-handed, Coker also acknowledges that in 1992, New York "public health officials had little option other than to implement coercive health measures."
Still, Coker's book deserves to be read by those involved in tuberculosis control and other public health campaigns. It is telling that the most aggressive challenge to the use of coercion in New York has come from Coker, a British clinician, rather than from the local advocates for civil liberties and patients' rights who criticized, but ultimately condoned, the strategies of the health department. Coker is also correct in urging that programs of detention implemented during periods of crisis be reconsidered as the threat to public health diminishes. Finally, given the current epidemic of tuberculosis in the Third World, Coker's reminder that the disease is connected to global politics could not be more timely.
Barron H. Lerner, M.D., Ph.D.
Copyright © 2000 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.
Review
“The book's careful scholarship belies its passion. It is a thoroughly documented and convincingly presented argument that inspires a reassessment of cultural assumptions and reflection on the epidemiological effects of these assumptions. Recommended . . .” ―Library Journal
“This book is well researched and cogently argued....” ―Choice
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