- Email: [email protected]
Catching Patients: Tuberculosis and Detention in the 1990s
opinions/hypotheses Catching Patients: Tuberculosis and Detention in the 1990s* Barron H. Lerner, MD, PhD
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. (CHEST 1999; 115:236 –241) Key words: communicable disease control/legislation and jurisprudence; homelessness; medical ethics; patient compliance; public health administration; quarantine; socioeconomic factors; tuberculosis/prevention and control Abbreviations: DOT 5 directly observed therapy; MDRTB 5 multidrug-resistant tuberculosis; NYCLU 5 New York Civil Liberties Union; UHF 5 United Hospital Fund
is unethical, illegal, and bad public health “I tpolicy to detain ‘noncompliant’ persons before
making concerted efforts to address the numerous systemic deficiencies that make adherence to treatFor related material see page 218
ment virtually impossible for many New Yorkers.”1 So wrote the New York City Tuberculosis Working Group, a coalition of activists evaluating efforts by *From the Center for the Study of Society & Medicine, Department of Medicine, Columbia University, New York, NY. Supported by the Robert Wood Johnson and the Arnold P. Gold Foundations. Dr. Lerner is a Robert Wood Johnson Generalist Faculty Physician Scholar. The opinions expressed in this paper do not necessarily reflect those of either foundation. Manuscript received March 10, 1998; revision accepted June 30, 1998. Correspondence to: Barron H. Lerner, MD, PhD, Center for the Study of Society & Medicine, Department of Medicine, Columbia University, Box 11, 630 West 168th St, New York, NY 10032; e-mail: [email protected] 236
New York in 1992 to use coercive measures to control a resurgent epidemic of tuberculosis (TB). American health departments have forcibly detained TB patients since 1903,2 but the statement of the Working Group, plus a public hearing on proposed changes to the New York City health code, represented milestones in the use of public health powers. Prior to the 1990s, TB officials had encountered little resistance to the involuntary confinement of persistently nonadherent individuals. TB, after all, is a highly communicable disease spread by airborne respiratory secretions. Yet as New York and other cities addressed a precipitous rise in TB in the early 1990s, including highly lethal multidrug-resistant (MDR) strains,3 AIDS activists and other civil liberties advocates argued that detention should not be used to punish disadvantaged persons unable to adhere to antibiotic therapy. As of 1998, rates of TB have again decreased.4 Officials have attributed much of this decline to measures designed to improve adherence,5,6 most Opinions/Hypotheses
notably directly observed therapy (DOT), in which patients take twice- or thrice-weekly medications under the supervision of a health-care worker.7–9 While a voluntary service for most patients, those unwilling or unable to adhere to antibiotic treatment may be mandated to have DOT. In addition, several health departments have detained patients after concluding that mandatory DOT was either unsuccessful or unrealistic. Using a series of articles on detention published in 1997, this paper will offer some opinions on the use of forcible confinement in the 1990s. How well have detention programs balanced the need to protect the public’s health with the civil liberties of TB patients? Has forcible isolation been used as a substitute for addressing the underlying causes of nonadherence?
Devising Ethical Detention Strategies New York was the first municipality to segregate persons with TB. In 1903, 21 years after Koch demonstrated the communicability of TB (or consumption, as it was also known), the city opened a detention facility at Riverside Hospital. Detention, only one part of a program designed by Hermann Biggs to control TB in New York,2 was reserved for patients who repeatedly disregarded regulations to prevent the spread of the disease. In practice, however, Riverside became less a public health facility than a repository for “fractious and intractable” immigrants, vagrants, and alcoholics.10 The blurring of medical and social indications for detention is revealed in a quote by Biggs: “Homeless, friendless, dependent, dissipated and vicious consumptives are likely to be most dangerous to the community.”11 Especially aggressive detention of nonadherent TB patients occurred in the 1950s and 1960s, after the introduction of curative antibiotics. More than 30 states employed compulsory hospitalization.12 Recognizing the potential abuse of public health powers, officials attempted to limit coercion to individuals who repeatedly violated regulations. Nevertheless, as in the past, nonadherence was often reflexively equated with a “skid row” alcoholic lifestyle. As recent research has demonstrated,12 Skid row alcoholics in this era were often forcibly isolated, even if their TB was inactive; in contrast, health officials at times declined to detain nonadherent middle-class persons who were truly public health threats. Although civil liberties groups occasionally mounted challenges, courts continued to grant health departments broad power to control TB.12 As TB declined in the 1970s and 1980s, so, too, did detention. By 1992, however, TB had returned. The number of cases in the United States had increased
to 26,673 from 22,101 in 1985.13 Between 1979 and 1982, the incidence of the disease in New York City had tripled.14(Table 1) Moreover, MDR strains of TB, which could not be treated with conventional antibiotic regimens, were causing outbreaks in homeless shelters, jails, and hospitals. Fatality rates for multidrug-resistant tuberculosis (MDRTB) approached 90% for persons co-infected with the HIV virus.3,15 The rise in TB and drug resistance was multifactorial, but nonadherence played a major role. A 1991 study found that 89% of patients at New York’s Harlem Hospital did not complete their prescribed course of antibiotics due to either personal issues or obstacles in the system.16 In response, clinicians, ethicists, and health departments devised a series of strategies for ensuring that TB patients completed their medications.17–22 The most comprehensive of these recommendations came from a 1992 panel convened by New York’s United Hospital Fund (UHF).23 The panel stressed the dramatic changes that had occurred in civil commitment and patient autonomy since the 1970s. The courts, responding to revelations about the inappropriate and often violent hospitalization of the mentally ill,24,25 now insisted that potentially confined patients receive full due process protections.26 Meanwhile, the rise of a vocal patients’ rights movement— embodied by HIV-positive individuals demanding involvement in treatment decisions—reminded the public health community to respect patients’ rights.27 Given this history, detention of the tuberculous truly needed to be a measure of last resort, used only when an individual posed significant risk to the public. Drawing on cases regarding the mentally ill, the UHF panel and other authors advised health departments to use a strategy of “least restrictive alternatives” for enhancing patient adherence. These options ranged from a series of enablers or incentives, such as tokens or food coupons, to mandatory DOT.28,29 Only if patients remained nonadherent would detention be appropriate. In addition to least restrictive alternatives, potentially detained individuals were to receive other due process protections, including judicial review and provision of counsel.18,19,23 Commentators also strongly encouraged the use of locked hospital wards—rather than criminal facilities—as the sites of isolation. Such units, wrote a New York Academy of Medicine committee, should not be “punitive or custodial but therapeutic.”30 Those confined to locked wards “are not convicted criminals undergoing punishment but noncompliant patients who require medical and social assistance.”30 Authors explicitly acknowledged that detainees were likely to be socially disadvantaged. The homeCHEST / 115 / 1 / JANUARY, 1999
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less, recent immigrants, injection drug users, and persons with HIV were especially susceptible to TB. As such, health departments not only needed to avoid discriminating against such individuals, but also to consider how social problems potentially predisposed the poor to nonadherence. Patients diagnosed with TB, wrote the UHF panel, were entitled to “a social and psychiatric assessment and a plan to provide appropriate medical and social services, including housing, drug abuse treatment, and mental health care.”23(p 22,23) Even as they called for improved social services, commentators argued that health departments should be entitled to detain noninfectious patients until cure, a standard not previously allowed.23(p 22,23) In other words, long-term detention was permissible for patients—regardless of the immediate public health threat they posed— because their past behavior indicated likely future nonadherence. Confinement until cure was likely constitutional, wrote ethicist George Annas,18 if clear and convincing evidence existed that no less restrictive alternative would succeed. Despite the inclusion of due process protections, some criticized the proposed plans. Such arguments were most evident in the report of the New York City Working Group,1 in dissenting statements to the UHF report,23(p 30 –32) and at public hearings held in December 1992, before the revision of New York’s health code.31 At the hearings, in particular, there was extensive discussion about providing TB patients the same civil liberties protections that HIV-positive persons had demanded. The revised New York health code,32 adopted in March 1993, contained the exact provisions that the UHF panel had advocated. Indeed, the New York code served as a model for other health departments initiating detention programs. Yet critics, such as Virginia Shubert of Housing Works, attacked two aspects of the code as “conferring public health officials overbroad or unguided discretion” to restrict personal liberties.31(p 56) First, they argued that the Department of Health’s ability to detain remained too arbitrary. “The most striking omission in the proposal,” argued Robert Levy of the New York Civil Liberties Union (NYCLU), “is the absence of any requirements that less restrictive measures be exhausted or proven ineffective before the Commissioner can exercise her powers of coercion.”31(p 156) As a result, claimed Scott Cotenoff of the New York City Commission on Human Rights, there was no indication “that detention orders are contemplated only as a last resort.”31(p 113) Second, critics felt that neither the health code— nor the UHF recommendations— emphasized the need to eliminate all barriers to nonadherence prior 238
to detention. Because nonadherence is “socially rooted” in homelessness, untreated drug and alcohol addiction, and psychiatric disorders, stated ethicist Ronald Bayer, the city or state needed to assume responsibility for rectifying these problems. Until then, it was “unfair to threaten with deprivations of liberty” those whose social circumstances made adherence impossible.31(p 40) As David Hansell of the Gay Men’s Health Crisis argued, “Charging ahead with new legal structures commanding treatment until cure, without providing the supports to accomplish such treatment, will only guarantee that detention comes to be utilized more often rather than less.”23(p 31)
Has Detention Been Used Appropriately? Were Hansell’s fears warranted? As of 1997, reports have been published on four detention programs: Denver (20 patients detained from 1984 to 1994),33 Massachusetts (166 patients from 1990 to 1995),34 California (67 patients in 1994 and 1995),35 and New York City (46 patients in 1993 and 1994).36 New York’s report was preliminary; the city has detained more than 250 patients since 1993 (Gasner R, JD; personal communication; February 19, 1998). Although these reports do not necessarily reflect the use of detention everywhere, the four programs are among the most active in the country.37 Moreover, they have all attempted to devise strategies that balance public health powers with civil liberties concerns. As a result, their efforts are worth scrutinizing. The four health departments all report using detention as a last resort, only after less restrictive approaches, such as DOT, have failed. Although compulsory DOT is itself restrictive, it appears that it can prevent broader reliance on confinement.28,29 During the first 2 years of New York’s efforts, for example, 174 of 233 patients (75%) placed on mandatory DOT did not subsequently require detention (Gasner R, JD, unpublished data). In the four localities, forcible isolation has been employed for only 1.3 to 5% of all TB patients. Although published data do not document the extent of psychosocial support offered, officials in Denver, Massachusetts, and New York regularly offer some rehabilitative services to patients prior to detention. For example, in Denver and New York, homeless persons have been given housing to try to improve their adherence.33,38 Clinic patients in Denver have “ready access” to alcohol and drug detoxification and treatment programs.33 Health officials have also offered repeatedly uncooperative patients a series of chances. In New York, Marie C., a 33-yearOpinions/Hypotheses
old woman with active pulmonary TB, left hospitals against advice, used aliases, and even threw away medications in the presence of health workers. Rather than detaining her, city officials devised several strategies to help her adhere to mandatory DOT. It was only when she had failed all of these efforts that a detention order was issued. The order was upheld in court.39 TB in the 1990s has disproportionately affected groups such as the homeless and substance users, but available data indicate that detained patients are considerably more likely to have such problems.33,35 Of the 20 people detained in Denver, for example, 18 were alcoholic and 19 were homeless.33 Yet health officials have reiterated that they have detained patients not because of social characteristics but because such individuals have remained persistently nonadherent despite numerous interventions. Officials have bolstered this point by showing that high percentages of patients with multiple social problems have completed treatment without being detained. For instance, 86% of Denver’s alcoholics never required isolation33; in New York, 91% of patients with a history of homelessness were treated without confinement (Gasner R, JD; unpublished data). Once detained, patients are given opportunities to address sociomedical problems. Massachusetts, for example, has developed a “therapeutic milieu” that uses education, psychotherapy, and leisure skill development to confront mental illness, substance use, and homelessness.34 New York City’s Goldwater Hospital provides similar services, including exercise equipment, a library, and a computer room. Both Massachusetts and New York reward good behavior with privileges, including early release.40 In Massachusetts, 75% of detained patients completed therapy at home.34 Although the published articles do not document either the frequency or outcomes of patient challenges to detention, legal authorities appear to support current health department methods. Data obtained from New York show that the Department of Health lost only one of 150 hearings between 1993 and 1997. In this case, the judge ordered mandatory DOT as opposed to detention. (The patient did not cooperate and later was detained.) (Frieden T, MD; personal communication; February 19, 1998.) A New York court also supported the Department of Health in 1994 when several civil liberties organizations challenged the city’s ability to detain a nonadherent patient without first exhausting all least restrictive alternatives. In this case, a woman with MDRTB objected to confinement at Goldwater without an initial chance at mandatory DOT. The court ruled the city had provided clear and convinc-
ing evidence of the patient’s inability to comply based on “her history of drug abuse, unstable or uncertain housing accommodations, apparent inability, as demonstrated by her own testimony, to understand the nature and seriousness of her condition, and refusal to cooperate with . . . voluntary forms of directly observed therapy.”41 The final necessary component of a just detention program is evidence of efficacy. Coercion— however well-implemented—would be hard to justify if detainees were not completing therapy. The four jurisdictions report treatment completion rates ranging from 83 to 97%.33–36 Given that those confined represent an extremely recidivist population, such statistics are impressive.
Continued Ethical Concerns Yet, as ethicists and civil libertarians emphasize, the ends may not justify the means. Despite demonstrating major strides in respecting patients’ civil rights, the current data raise several concerns. For one thing, more sophisticated models of civil detention are not being used everywhere. In California, detained TB patients, most having committed no crime, are tried under criminal statutes and confined in jail. As Oscherwitz et al35 note, “using jail to detain nonadherent patients is ethically problematic.” This principle is especially important to remember as rates of TB decline and funding for locked hospital facilities may be cut. The published studies also reveal striking differences in duration of confinement. Although California, Massachusetts, and Denver at times detain patients until cure, most patients are discharged while taking medication. In Denver, for example, 17 of 20 patients (85%) completed therapy at home.33 In New York, in contrast, noninfectious patients are detained with the expectation that they will remain until cure. In 1993 and 1994, city officials permitted early discharge for only 10% of confined patients.42 As a result, the median length of confinement in New York was more than twice as long (186 days) as in any other location. One patient stayed for 654 days.36 The long periods of confinement in New York likely reflected the fact that many patients in 1993 and 1994 were coinfected with HIV or had MDR strains. If curable at all, MDRTB generally requires 18 to 24 months of therapy as opposed to 6 to 9 months for uncomplicated cases.43 Indeed, once MDRTB declined, the length of stay at Goldwater Hospital decreased. The duration of confinement in New York may also partially be explained by case selection. Detainees in New York had higher rates of illicit drug use, particularly crack, which is associated CHEST / 115 / 1 / JANUARY, 1999
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with a disordered lifestyle.36 In addition, because New York has relied heavily on mandatory DOT, it may not have isolated persons who might have required only short periods of confinement. Yet even if New York’s detainees are more “difficult” patients, the use of more rapid discharge elsewhere raises the question whether New York might confine until cure less often. Revisiting this issue is especially important because patients requiring the longest lengths of stay— both in New York and Massachusetts— have been homeless and injection drug users.34,36 Lack of social supports alone should never become a justification for hospitalizing certain populations for longer periods of time. It should also be noted that, despite civil liberties concerns, health officials still have the ability to detain some patients without exhausting least restrictive alternatives. For example, four of Denver’s detainees were incarcerated after trying to leave the hospital against medical advice with newly diagnosed TB.33 Whereas New York courts have at times permitted officials to bypass certain less restrictive alternatives, such exceptions open the possibility for abuse. Thirty years ago, well-meaning Seattle TB officials overused forcible isolation once legal safeguards were relaxed.12 Another issue raised in Seattle remains relevant. Seattle established a locked ward at Firland Sanatorium in 1949 to protect the community from infectious TB patients. Ultimately, however, Firland staff members conflated public health and custodial objectives: they used their public health powers to maintain order, detaining disruptive skid row alcoholics who violated sanatorium rules.12 As in Seattle, modern TB officials are also assessing the behavior of confined patients, rewarding cooperative persons and punishing those who violate rules. Moreover, comportment in the hospital is one factor used to assess whether patients may be discharged early.34,42 Thus, at a recent discharge conference at Goldwater, health officials discussed how certain patients smoked in their rooms, had unprotected sex, or declined substance abuse counseling. While assessment of such behaviors is essential for operating an inpatient unit, concerns about punishing patients who are confined for public health reasons remain quite relevant. Misbehavior during involuntary confinement does not necessarily portend nonadherence to medical regimens after discharge. Patients’ legal rights may also be obscured once they are institutionalized. Although new regulations generally call for mandatory judicial review of all cases, in practice such reviews may be delayed 60 days32 or even indefinitely34 if patients do not request them. In New York, officials estimate that as many as half of detained patients decline the option of a hearing (Gasner R, JD; personal communica240
tion; February 19, 1998). This disinclination to pursue legal redress may result in part from the lack of a formal “triggering” mechanism. In the early years at Goldwater, the NYCLU urged hospital staff to expand patient exercise facilities, relax certain rules, and consider the formation of a patients’ organization. Over the past 3 years, however, no NYCLU representative has visited Goldwater, nor have any patients contacted the organization (Middleton J, JD; personal communication; December 2, 1997). While this development may reflect improvements at Goldwater, it also highlights the potential for lessened scrutiny once detention regulations have been debated and adopted. Conclusion When health departments in the early 1990s began to detain persistently nonadherent TB patients, the old motto, “The public health is the highest law,” had been modified. Concerns about civil liberties and patient autonomy, formerly given short shrift, took center stage. In addition, activists warned that even the new regulations still potentially discriminated against persons whose social circumstances precluded adherence. The early published literature on detention in the 1990s indicates that public health officials have responded equitably to the problem of the nonadherent TB patient, developing sophisticated guidelines that permit coercion only as a last resort. However, the rights of nonadherent persons still remain limited. For example, courts have not obligated government to rectify problems such as homelessness or drug addiction before detention is used.44 In addition, health departments retain great discretion in determining how long noninfectious patients remain confined and what transgressions constitute unacceptable behavior. It is essential to scrutinize such authority. The new detention regulations implemented at the beginning of the decade reflected a public health emergency. Rates of TB were rapidly increasing and MDR strains were causing outbreaks with high fatality rates. Now that better control of TB has again been achieved,4,45 the actual threat of nonadherent patients to the public’s health should be reassessed (Coker RJ; unpublished data). While, as Efferen argues, “we should not shy away from the use of restrictive measures if necessary,”6 treating sick people with forcible detention must remain a strategy of last resort. ACKNOWLEDGMENTS: The author would like to thank Nancy Dubler, Thomas Frieden, Rose Gasner, and Phillip Lerner for reviewing the manuscript. Jennifer Brown and Henry Huang provided research assistance and Jennifer Roemer helped to prepare the manuscript. Opinions/Hypotheses
References 1 New York City Tuberculosis Working Group. Developing a system for tuberculosis prevention and care in New York City. In: The tuberculosis revival: individual rights and societal obligations in a time of AIDS (Special Report Series). New York: United Hospital Fund, 1992; 51–58 2 Lerner BH. New York City’s tuberculosis control efforts: the historical limitations of the war on consumption.’ Am J Public Health 1993; 83:758 –766 3 Frieden TR, Sterling T, Pablos-Mendez A, et al. The emergence of drug-resistant tuberculosis in New York City. N Engl J Med 1993; 328:521–526 4 Tuberculosis morbidity–United States, 1996. Morb Mortal Wkly Rep 1997; 46:695–700 5 Nolan CM. Beyond directly observed therapy for tuberculosis [editorial]. Chest 1997; 111:1151–1153 6 Efferen LS. In pursuit of tuberculosis control: civil liberty vs public health [editorial]. Chest 1997; 112:5– 6 7 Weis SE, Slocum PC, Blais FX, et al. The effect of directly observed therapy on the rates of drug resistance and relapse in tuberculosis. N Engl J Med 1994; 330:1179 –1184 8 Chaulk CP, Moore-Rice K, Rizzo R, et al. Eleven years of community-based directly observed therapy for tuberculosis. JAMA 1995; 274:945–951 9 Burman WJ, Cohn DL, Rietmeijer CA, et al. Noncompliance with directly observed therapy for tuberculosis: epidemiology and effect on the outcome of treatment. Chest 1997; 111: 1168 –1173 10 Rothman SM. Living in the shadow of death: tuberculosis and the social experience of illness in American history. New York: Basic Books, 1994 11 Biggs HM. The administrative control of tuberculosis. Medical News 1904; 84:337–345 12 Lerner BH. Temporarily detained: tuberculous alcoholics in Seattle, 1949 through 1960. Am J Public Health 1996; 86:257–265 13 Cantwell MF, Snider DE Jr, Cauthen GM, et al. Epidemiology of tuberculosis in the United States, 1985 through 1992. JAMA 1994; 272:535–539 14 Tuberculosis in New York City 1992: information summary. New York: New York City Department of Health, 1993 15 Centers for Disease Control. Nosocomial transmissions of multidrug-resistant tuberculosis among HIV-infected persons—Florida and New York, 1988 –1991. Morb Mortal Wkly Rep 1991; 40:585–591 16 Brudney K, Dobkin J. Resurgent tuberculosis in New York City: human immunodeficiency virus, homelessness, and the decline of tuberculosis control programs. Am Rev Respir Dis 1991; 144:745–749 17 Centers for Disease Control. Tuberculosis control laws— United States, 1993: recommendations of the Advisory Council for the Elimination of Tuberculosis (ACET). Morb Mortal Wkly Rep 1993; 42 (no. RR-15) 18 Annas GJ. Control of tuberculosis: the law and the public’s health. N Engl J Med 1993; 328:585–588 19 Gostin LO. Controlling the resurgent tuberculosis epidemic: a 50-state survey of TB statutes and proposals for reform. JAMA 1993; 269:255–561 20 Pozsik CJ. Compliance with tuberculosis therapy. Med Clin North Am 1993; 77:1289 –1301 21 Reilly RG. Combating the tuberculosis epidemic: the legality of coercive treatment measures. Columbia J Law Soc Probl 1993; 27:101–149 22 Improving patient adherence to tuberculosis treatment. Atlanta: Centers for Disease Control and Prevention, 1994 23 Dubler NN, Bayer R, Landesman S, et al. Tuberculosis in the
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1990s: ethical, legal, and public policy issues in screening, treatment, and the protection of those in congregate facilities. In: The tuberculosis revival: individual rights and societal obligations in a time of AIDS (Special Report Series). New York: United Hospital Fund, 1992; 1– 41 Szasz TS. Law, liberty, and psychiatry: an inquiry into the social uses of mental health practices. New York: Collier Books, 1963 Braslow JT. Mental ills and bodily cures: psychiatric treatment in the first half of the twentieth century. Berkeley, CA: University of California Press, 1998 Bayer R, Dupuis L. Tuberculosis, public health, and civil liberties. Annu Rev Public Health 1995; 16:307–326 Epstein S. Impure science: AIDS, activism, and the politics of knowledge. Berkeley, CA: University of California Press, 1996 Chaulk CP, Pope DS. The Baltimore city health department program of directly observed therapy for tuberculosis. Clin Chest Med 1997; 18:149 –154 Fujiwara PI, Larkin C, Frieden TR. Directly observed therapy in New York City: history, implementation, results, and challenges. Clin Chest Med 1997; 18:135–148 New York Academy of Medicine, Committee on Single Disease Institutions for Tuberculosis. Recommendations on the facilities needed to care for patients with tuberculosis. In: The tuberculosis revival: individual rights and societal obligations in a time of AIDS (Special Report Series). New York: United Hospital Fund, 1992; 43– 49 New York City Health Code. Public hearing of the proposed amendment to section 11.47, December 3, 1992 New York City Health Code. Amended version of section 11.47, March 31, 1993 Burman WJ, Cohn DL, Rietmeijer CA, et al. Short-term incarceration for the management of noncompliance with tuberculosis treatment. Chest 1997; 112:57– 62 Singleton L, Turner M, Haskal R, et al. Long-term hospitalization for tuberculosis control. JAMA 1997; 278:838 – 842 Oscherwitz T, Tulsky JP, Roger S, et al. Detention of persistently nonadherent patients with tuberculosis. JAMA 1997; 278:843– 846 Feldman G, Srivastava P, Eden E, et al. Detention until cure as a last resort: New York City’s experience with involuntary in-hospital civil detention of persistently nonadherent tuberculosis patients. Semin Respir Crit Care Med 1997; 18:493–501 Lo B, Alpers A. The view from five states: policy and legal dilemmas regarding refractory tuberculosis patients—a national meeting; October 24 –25, 1996; Program in Medical Ethics, University of California at San Francisco Wangerin R. Nonadherence: a re-detainee’s story. TB Times (New York City Department of Health) 1996; 9:6 Petitioners v Antoinette R, also known as Marie C, also known as Chastity C, respondent, 165 Misc 2d 1014; 630 NYS 2d 1008; 1995 NY misc LEXIS 392 Goldwater: a glimpse into the TB detention facility. TB Times (of the New York City Department of Health) 1996; 9:6 –7 City of New York, et al., respondents v Mary Doe, appellant, 205 AD 2d 469; 614 NYS 2d 8; 1994 app div LEXIS 6748 Gasner R. Detention and its role in TB control in NYC. TB Times (of the New York City Department of Health) 1996; 9:4 –5 Cohn DL. Treatment of multidrug-resistant tuberculosis. J Hosp Infect 1995; 30(suppl):322–328 Lerner BH. Contagion and confinement: controlling tuberculosis along the skid road. Baltimore, MD: Johns Hopkins University Press, 1998 Frieden TR, Fujiwara PI, Washko RM, et al. Tuberculosis in New York City—turning the tide. NEJM 1995; 333:229 –233
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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. (CHEST 1999; 115:236 –241) Key words: communicable disease control/legislation and jurisprudence; homelessness; medical ethics; patient compliance; public health administration; quarantine; socioeconomic factors; tuberculosis/prevention and control Abbreviations: DOT 5 directly observed therapy; MDRTB 5 multidrug-resistant tuberculosis; NYCLU 5 New York Civil Liberties Union; UHF 5 United Hospital Fund
is unethical, illegal, and bad public health “I tpolicy to detain ‘noncompliant’ persons before
making concerted efforts to address the numerous systemic deficiencies that make adherence to treatFor related material see page 218
ment virtually impossible for many New Yorkers.”1 So wrote the New York City Tuberculosis Working Group, a coalition of activists evaluating efforts by *From the Center for the Study of Society & Medicine, Department of Medicine, Columbia University, New York, NY. Supported by the Robert Wood Johnson and the Arnold P. Gold Foundations. Dr. Lerner is a Robert Wood Johnson Generalist Faculty Physician Scholar. The opinions expressed in this paper do not necessarily reflect those of either foundation. Manuscript received March 10, 1998; revision accepted June 30, 1998. Correspondence to: Barron H. Lerner, MD, PhD, Center for the Study of Society & Medicine, Department of Medicine, Columbia University, Box 11, 630 West 168th St, New York, NY 10032; e-mail: [email protected] 236
New York in 1992 to use coercive measures to control a resurgent epidemic of tuberculosis (TB). American health departments have forcibly detained TB patients since 1903,2 but the statement of the Working Group, plus a public hearing on proposed changes to the New York City health code, represented milestones in the use of public health powers. Prior to the 1990s, TB officials had encountered little resistance to the involuntary confinement of persistently nonadherent individuals. TB, after all, is a highly communicable disease spread by airborne respiratory secretions. Yet as New York and other cities addressed a precipitous rise in TB in the early 1990s, including highly lethal multidrug-resistant (MDR) strains,3 AIDS activists and other civil liberties advocates argued that detention should not be used to punish disadvantaged persons unable to adhere to antibiotic therapy. As of 1998, rates of TB have again decreased.4 Officials have attributed much of this decline to measures designed to improve adherence,5,6 most Opinions/Hypotheses
notably directly observed therapy (DOT), in which patients take twice- or thrice-weekly medications under the supervision of a health-care worker.7–9 While a voluntary service for most patients, those unwilling or unable to adhere to antibiotic treatment may be mandated to have DOT. In addition, several health departments have detained patients after concluding that mandatory DOT was either unsuccessful or unrealistic. Using a series of articles on detention published in 1997, this paper will offer some opinions on the use of forcible confinement in the 1990s. How well have detention programs balanced the need to protect the public’s health with the civil liberties of TB patients? Has forcible isolation been used as a substitute for addressing the underlying causes of nonadherence?
Devising Ethical Detention Strategies New York was the first municipality to segregate persons with TB. In 1903, 21 years after Koch demonstrated the communicability of TB (or consumption, as it was also known), the city opened a detention facility at Riverside Hospital. Detention, only one part of a program designed by Hermann Biggs to control TB in New York,2 was reserved for patients who repeatedly disregarded regulations to prevent the spread of the disease. In practice, however, Riverside became less a public health facility than a repository for “fractious and intractable” immigrants, vagrants, and alcoholics.10 The blurring of medical and social indications for detention is revealed in a quote by Biggs: “Homeless, friendless, dependent, dissipated and vicious consumptives are likely to be most dangerous to the community.”11 Especially aggressive detention of nonadherent TB patients occurred in the 1950s and 1960s, after the introduction of curative antibiotics. More than 30 states employed compulsory hospitalization.12 Recognizing the potential abuse of public health powers, officials attempted to limit coercion to individuals who repeatedly violated regulations. Nevertheless, as in the past, nonadherence was often reflexively equated with a “skid row” alcoholic lifestyle. As recent research has demonstrated,12 Skid row alcoholics in this era were often forcibly isolated, even if their TB was inactive; in contrast, health officials at times declined to detain nonadherent middle-class persons who were truly public health threats. Although civil liberties groups occasionally mounted challenges, courts continued to grant health departments broad power to control TB.12 As TB declined in the 1970s and 1980s, so, too, did detention. By 1992, however, TB had returned. The number of cases in the United States had increased
to 26,673 from 22,101 in 1985.13 Between 1979 and 1982, the incidence of the disease in New York City had tripled.14(Table 1) Moreover, MDR strains of TB, which could not be treated with conventional antibiotic regimens, were causing outbreaks in homeless shelters, jails, and hospitals. Fatality rates for multidrug-resistant tuberculosis (MDRTB) approached 90% for persons co-infected with the HIV virus.3,15 The rise in TB and drug resistance was multifactorial, but nonadherence played a major role. A 1991 study found that 89% of patients at New York’s Harlem Hospital did not complete their prescribed course of antibiotics due to either personal issues or obstacles in the system.16 In response, clinicians, ethicists, and health departments devised a series of strategies for ensuring that TB patients completed their medications.17–22 The most comprehensive of these recommendations came from a 1992 panel convened by New York’s United Hospital Fund (UHF).23 The panel stressed the dramatic changes that had occurred in civil commitment and patient autonomy since the 1970s. The courts, responding to revelations about the inappropriate and often violent hospitalization of the mentally ill,24,25 now insisted that potentially confined patients receive full due process protections.26 Meanwhile, the rise of a vocal patients’ rights movement— embodied by HIV-positive individuals demanding involvement in treatment decisions—reminded the public health community to respect patients’ rights.27 Given this history, detention of the tuberculous truly needed to be a measure of last resort, used only when an individual posed significant risk to the public. Drawing on cases regarding the mentally ill, the UHF panel and other authors advised health departments to use a strategy of “least restrictive alternatives” for enhancing patient adherence. These options ranged from a series of enablers or incentives, such as tokens or food coupons, to mandatory DOT.28,29 Only if patients remained nonadherent would detention be appropriate. In addition to least restrictive alternatives, potentially detained individuals were to receive other due process protections, including judicial review and provision of counsel.18,19,23 Commentators also strongly encouraged the use of locked hospital wards—rather than criminal facilities—as the sites of isolation. Such units, wrote a New York Academy of Medicine committee, should not be “punitive or custodial but therapeutic.”30 Those confined to locked wards “are not convicted criminals undergoing punishment but noncompliant patients who require medical and social assistance.”30 Authors explicitly acknowledged that detainees were likely to be socially disadvantaged. The homeCHEST / 115 / 1 / JANUARY, 1999
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less, recent immigrants, injection drug users, and persons with HIV were especially susceptible to TB. As such, health departments not only needed to avoid discriminating against such individuals, but also to consider how social problems potentially predisposed the poor to nonadherence. Patients diagnosed with TB, wrote the UHF panel, were entitled to “a social and psychiatric assessment and a plan to provide appropriate medical and social services, including housing, drug abuse treatment, and mental health care.”23(p 22,23) Even as they called for improved social services, commentators argued that health departments should be entitled to detain noninfectious patients until cure, a standard not previously allowed.23(p 22,23) In other words, long-term detention was permissible for patients—regardless of the immediate public health threat they posed— because their past behavior indicated likely future nonadherence. Confinement until cure was likely constitutional, wrote ethicist George Annas,18 if clear and convincing evidence existed that no less restrictive alternative would succeed. Despite the inclusion of due process protections, some criticized the proposed plans. Such arguments were most evident in the report of the New York City Working Group,1 in dissenting statements to the UHF report,23(p 30 –32) and at public hearings held in December 1992, before the revision of New York’s health code.31 At the hearings, in particular, there was extensive discussion about providing TB patients the same civil liberties protections that HIV-positive persons had demanded. The revised New York health code,32 adopted in March 1993, contained the exact provisions that the UHF panel had advocated. Indeed, the New York code served as a model for other health departments initiating detention programs. Yet critics, such as Virginia Shubert of Housing Works, attacked two aspects of the code as “conferring public health officials overbroad or unguided discretion” to restrict personal liberties.31(p 56) First, they argued that the Department of Health’s ability to detain remained too arbitrary. “The most striking omission in the proposal,” argued Robert Levy of the New York Civil Liberties Union (NYCLU), “is the absence of any requirements that less restrictive measures be exhausted or proven ineffective before the Commissioner can exercise her powers of coercion.”31(p 156) As a result, claimed Scott Cotenoff of the New York City Commission on Human Rights, there was no indication “that detention orders are contemplated only as a last resort.”31(p 113) Second, critics felt that neither the health code— nor the UHF recommendations— emphasized the need to eliminate all barriers to nonadherence prior 238
to detention. Because nonadherence is “socially rooted” in homelessness, untreated drug and alcohol addiction, and psychiatric disorders, stated ethicist Ronald Bayer, the city or state needed to assume responsibility for rectifying these problems. Until then, it was “unfair to threaten with deprivations of liberty” those whose social circumstances made adherence impossible.31(p 40) As David Hansell of the Gay Men’s Health Crisis argued, “Charging ahead with new legal structures commanding treatment until cure, without providing the supports to accomplish such treatment, will only guarantee that detention comes to be utilized more often rather than less.”23(p 31)
Has Detention Been Used Appropriately? Were Hansell’s fears warranted? As of 1997, reports have been published on four detention programs: Denver (20 patients detained from 1984 to 1994),33 Massachusetts (166 patients from 1990 to 1995),34 California (67 patients in 1994 and 1995),35 and New York City (46 patients in 1993 and 1994).36 New York’s report was preliminary; the city has detained more than 250 patients since 1993 (Gasner R, JD; personal communication; February 19, 1998). Although these reports do not necessarily reflect the use of detention everywhere, the four programs are among the most active in the country.37 Moreover, they have all attempted to devise strategies that balance public health powers with civil liberties concerns. As a result, their efforts are worth scrutinizing. The four health departments all report using detention as a last resort, only after less restrictive approaches, such as DOT, have failed. Although compulsory DOT is itself restrictive, it appears that it can prevent broader reliance on confinement.28,29 During the first 2 years of New York’s efforts, for example, 174 of 233 patients (75%) placed on mandatory DOT did not subsequently require detention (Gasner R, JD, unpublished data). In the four localities, forcible isolation has been employed for only 1.3 to 5% of all TB patients. Although published data do not document the extent of psychosocial support offered, officials in Denver, Massachusetts, and New York regularly offer some rehabilitative services to patients prior to detention. For example, in Denver and New York, homeless persons have been given housing to try to improve their adherence.33,38 Clinic patients in Denver have “ready access” to alcohol and drug detoxification and treatment programs.33 Health officials have also offered repeatedly uncooperative patients a series of chances. In New York, Marie C., a 33-yearOpinions/Hypotheses
old woman with active pulmonary TB, left hospitals against advice, used aliases, and even threw away medications in the presence of health workers. Rather than detaining her, city officials devised several strategies to help her adhere to mandatory DOT. It was only when she had failed all of these efforts that a detention order was issued. The order was upheld in court.39 TB in the 1990s has disproportionately affected groups such as the homeless and substance users, but available data indicate that detained patients are considerably more likely to have such problems.33,35 Of the 20 people detained in Denver, for example, 18 were alcoholic and 19 were homeless.33 Yet health officials have reiterated that they have detained patients not because of social characteristics but because such individuals have remained persistently nonadherent despite numerous interventions. Officials have bolstered this point by showing that high percentages of patients with multiple social problems have completed treatment without being detained. For instance, 86% of Denver’s alcoholics never required isolation33; in New York, 91% of patients with a history of homelessness were treated without confinement (Gasner R, JD; unpublished data). Once detained, patients are given opportunities to address sociomedical problems. Massachusetts, for example, has developed a “therapeutic milieu” that uses education, psychotherapy, and leisure skill development to confront mental illness, substance use, and homelessness.34 New York City’s Goldwater Hospital provides similar services, including exercise equipment, a library, and a computer room. Both Massachusetts and New York reward good behavior with privileges, including early release.40 In Massachusetts, 75% of detained patients completed therapy at home.34 Although the published articles do not document either the frequency or outcomes of patient challenges to detention, legal authorities appear to support current health department methods. Data obtained from New York show that the Department of Health lost only one of 150 hearings between 1993 and 1997. In this case, the judge ordered mandatory DOT as opposed to detention. (The patient did not cooperate and later was detained.) (Frieden T, MD; personal communication; February 19, 1998.) A New York court also supported the Department of Health in 1994 when several civil liberties organizations challenged the city’s ability to detain a nonadherent patient without first exhausting all least restrictive alternatives. In this case, a woman with MDRTB objected to confinement at Goldwater without an initial chance at mandatory DOT. The court ruled the city had provided clear and convinc-
ing evidence of the patient’s inability to comply based on “her history of drug abuse, unstable or uncertain housing accommodations, apparent inability, as demonstrated by her own testimony, to understand the nature and seriousness of her condition, and refusal to cooperate with . . . voluntary forms of directly observed therapy.”41 The final necessary component of a just detention program is evidence of efficacy. Coercion— however well-implemented—would be hard to justify if detainees were not completing therapy. The four jurisdictions report treatment completion rates ranging from 83 to 97%.33–36 Given that those confined represent an extremely recidivist population, such statistics are impressive.
Continued Ethical Concerns Yet, as ethicists and civil libertarians emphasize, the ends may not justify the means. Despite demonstrating major strides in respecting patients’ civil rights, the current data raise several concerns. For one thing, more sophisticated models of civil detention are not being used everywhere. In California, detained TB patients, most having committed no crime, are tried under criminal statutes and confined in jail. As Oscherwitz et al35 note, “using jail to detain nonadherent patients is ethically problematic.” This principle is especially important to remember as rates of TB decline and funding for locked hospital facilities may be cut. The published studies also reveal striking differences in duration of confinement. Although California, Massachusetts, and Denver at times detain patients until cure, most patients are discharged while taking medication. In Denver, for example, 17 of 20 patients (85%) completed therapy at home.33 In New York, in contrast, noninfectious patients are detained with the expectation that they will remain until cure. In 1993 and 1994, city officials permitted early discharge for only 10% of confined patients.42 As a result, the median length of confinement in New York was more than twice as long (186 days) as in any other location. One patient stayed for 654 days.36 The long periods of confinement in New York likely reflected the fact that many patients in 1993 and 1994 were coinfected with HIV or had MDR strains. If curable at all, MDRTB generally requires 18 to 24 months of therapy as opposed to 6 to 9 months for uncomplicated cases.43 Indeed, once MDRTB declined, the length of stay at Goldwater Hospital decreased. The duration of confinement in New York may also partially be explained by case selection. Detainees in New York had higher rates of illicit drug use, particularly crack, which is associated CHEST / 115 / 1 / JANUARY, 1999
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with a disordered lifestyle.36 In addition, because New York has relied heavily on mandatory DOT, it may not have isolated persons who might have required only short periods of confinement. Yet even if New York’s detainees are more “difficult” patients, the use of more rapid discharge elsewhere raises the question whether New York might confine until cure less often. Revisiting this issue is especially important because patients requiring the longest lengths of stay— both in New York and Massachusetts— have been homeless and injection drug users.34,36 Lack of social supports alone should never become a justification for hospitalizing certain populations for longer periods of time. It should also be noted that, despite civil liberties concerns, health officials still have the ability to detain some patients without exhausting least restrictive alternatives. For example, four of Denver’s detainees were incarcerated after trying to leave the hospital against medical advice with newly diagnosed TB.33 Whereas New York courts have at times permitted officials to bypass certain less restrictive alternatives, such exceptions open the possibility for abuse. Thirty years ago, well-meaning Seattle TB officials overused forcible isolation once legal safeguards were relaxed.12 Another issue raised in Seattle remains relevant. Seattle established a locked ward at Firland Sanatorium in 1949 to protect the community from infectious TB patients. Ultimately, however, Firland staff members conflated public health and custodial objectives: they used their public health powers to maintain order, detaining disruptive skid row alcoholics who violated sanatorium rules.12 As in Seattle, modern TB officials are also assessing the behavior of confined patients, rewarding cooperative persons and punishing those who violate rules. Moreover, comportment in the hospital is one factor used to assess whether patients may be discharged early.34,42 Thus, at a recent discharge conference at Goldwater, health officials discussed how certain patients smoked in their rooms, had unprotected sex, or declined substance abuse counseling. While assessment of such behaviors is essential for operating an inpatient unit, concerns about punishing patients who are confined for public health reasons remain quite relevant. Misbehavior during involuntary confinement does not necessarily portend nonadherence to medical regimens after discharge. Patients’ legal rights may also be obscured once they are institutionalized. Although new regulations generally call for mandatory judicial review of all cases, in practice such reviews may be delayed 60 days32 or even indefinitely34 if patients do not request them. In New York, officials estimate that as many as half of detained patients decline the option of a hearing (Gasner R, JD; personal communica240
tion; February 19, 1998). This disinclination to pursue legal redress may result in part from the lack of a formal “triggering” mechanism. In the early years at Goldwater, the NYCLU urged hospital staff to expand patient exercise facilities, relax certain rules, and consider the formation of a patients’ organization. Over the past 3 years, however, no NYCLU representative has visited Goldwater, nor have any patients contacted the organization (Middleton J, JD; personal communication; December 2, 1997). While this development may reflect improvements at Goldwater, it also highlights the potential for lessened scrutiny once detention regulations have been debated and adopted. Conclusion When health departments in the early 1990s began to detain persistently nonadherent TB patients, the old motto, “The public health is the highest law,” had been modified. Concerns about civil liberties and patient autonomy, formerly given short shrift, took center stage. In addition, activists warned that even the new regulations still potentially discriminated against persons whose social circumstances precluded adherence. The early published literature on detention in the 1990s indicates that public health officials have responded equitably to the problem of the nonadherent TB patient, developing sophisticated guidelines that permit coercion only as a last resort. However, the rights of nonadherent persons still remain limited. For example, courts have not obligated government to rectify problems such as homelessness or drug addiction before detention is used.44 In addition, health departments retain great discretion in determining how long noninfectious patients remain confined and what transgressions constitute unacceptable behavior. It is essential to scrutinize such authority. The new detention regulations implemented at the beginning of the decade reflected a public health emergency. Rates of TB were rapidly increasing and MDR strains were causing outbreaks with high fatality rates. Now that better control of TB has again been achieved,4,45 the actual threat of nonadherent patients to the public’s health should be reassessed (Coker RJ; unpublished data). While, as Efferen argues, “we should not shy away from the use of restrictive measures if necessary,”6 treating sick people with forcible detention must remain a strategy of last resort. ACKNOWLEDGMENTS: The author would like to thank Nancy Dubler, Thomas Frieden, Rose Gasner, and Phillip Lerner for reviewing the manuscript. Jennifer Brown and Henry Huang provided research assistance and Jennifer Roemer helped to prepare the manuscript. Opinions/Hypotheses
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