Tuberculosis, culture and coercion

Commeruaries

Tuberculosis, culture and coercion RICHARD COKER •

Tuberculosis is a global health emergency and one of the greatest threats to control Is posed by the development and spread of multidrug-reslstant strains. As a consequence the World Health Organization and others are emphasizing the need to ensure compliance. In New York City, which witnessed a substantial epidemic of multidrug-resistant tuberculosis in the late 1980/early 1990s, measures to increase treatment adherence were supported by the introduction of detention for persistently non-compliant patients. More than 200 non-infectious patients have been detained, most for 6 months, some for 2 years. Why was detention deemed a necessary public health tool? This paper highlights some of the cultural factors which likely influenced the decision to use coercive measures and reflects upon issues which Europe should not ignore.

Keywords: coercion, detention, ethics, law, New York, United States, policy, tuberculosis

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public health response? Does a consideration of US he success in calming the tuberculosis epidemic seen in culture teach us anything with regard to this question? New York City has largely been ascribed to the expansion Certainly for a complete understanding of tuberculosis of directly observed treatment (DOT).1 Certainly comcontrol we require more than simply an understanding of pletion-of-treatment rates for patients with tuberculosis, who those at risk are and introducing measures to surveil, which were dismal, are now respectable,2 rates of tuberdiagnose and treat them. We need to ask how do culosis have fallen substantially and drug-resistant cases historical, cultural, societal and political forces conspire are no longer the threat they once were.3 Supporting the to influence both the development of an epidemic such expansion of DOT in the city and little discussed outside as that seen in New York and understand how those forces the USA is an important public health measure: the determine the response. Unless we do this we risk detention of non-infectious, non-compliant patients. transferring policies which may have been successful Since the city's public health regulations were amended under one set of conditions, in one society, in one in 1993 more than 200 non-infectious patients have been country, but, when transposed elsewhere, are unsuccessful detained, most for 6 months, but some for more than 2 or inappropriate. Addressing all of these issues is beyond years. Many are HIV seropositive and, consequently, even the scope of this paper and I therefore focus upon one area, given the recent successes with anti-retroviral treatment, cultural notions of autonomy and individuality and how have a limited life expectancy. these, in the USA setting, influenced contemporary Typically the argument for the common good over indiresponses to an ancient disease. vidual rights is presented in the form of risk assessment.^ Whereas this argument is relatively straightforward from a utilitarian standpoint in patients who are infectious or THE USA: THE EXCEPTION can be expected to become infectious in the future, in the Of fundamental importance in this debate is the changing case of poorly compliant, non-infectious tuberculosis tension between individual responsibilities and societal patients the threat posed is neither certain, imminent, duties and obligations. If tuberculosis highlights not only nor, in all probability, very substantial in many cases. public health failures but also societal weaknesses, which Moreover, as the duration of treatment of tuberculosis is I believe it does, then the need for coercion highlights a extended the threat which might have existed, that is the failure of many individuals' obligations to society. The risk of relapse to an infectious state, dwindles further. New York City tuberculosis epidemic threw into light Therefore, the choice between individual rights and some of the fundamental societal and cultural questions societal rights becomes starker, with these choices currently being asked in the USA and Europe. To what bringing to light societies' changing response to those extent should society protect and offer assistance to the with tuberculosis who fail to comply with treatment and needy? To what extent should market forces be conwho largely reside on the margins of society.5'6 strained in the broader interests of society and, in partiIn the land of liberty why was detention of non-infectious cular, in the interests of those less able to 'compete'? How individuals deemed a necessary part of the New York City can the tensions between unabated individualism and communitarian responsibility be resolved? The tensions I have alluded to above are present in all industrial nations to some degree, yet in the USA and * Correspondence: R. Coker, Consultant Physiaan, St Mary's Hospital. most particularly in New York City they are more tangible London and Honorary Senior Lecturer, Imperial College School of Medicine, than elsewhere, the forces more powerful. To a large London, UK, e-mail: rj.cokerOlcac.uk

EUROPEAN JOURNAL OF PUBLIC HEALTH VOL 10 2000 NO. 3 degree what makes the USA at variance from much of the West, part of what makes the USA exceptional (to borrow Martin Seymour Lipset's phrase), is not that these tensions do not exist elsewhere, but the quality of them is different. Thus, for example, coercive public health measures have been adopted and implemented in many other countries, most recently and obviously with regard to HIV, including socialist Sweden and communist Cuba.7 What separates these polical and cultural states from the USA is not, dierefore, that coercion is not a feature, but that, in broad terms, it is resorted to when die community as a whole is threatened, that there is greater community solidarity, rather than when the boundaries separating the 'undeserving' from the 'deserving' are breached. As a consequence the tone of debate and, hence, the response regarding the most vulnerable is altered.

HISTORICAL REFLECTION Societies' response to the notion of autonomy has influenced policy decisions since before John Stuart Mill defined the 'harm principle'. In die field of tuberculosis control at the turn of the century bodi medical and social paternalistic approaches were in evidence and New York was in die vanguard of diese movements (dirough Herman Biggs' leadership). Personal autonomy was subsumed by die state's concern for community well-being and die belief diat 'experts know best'. At die turn of die century, after Koch had initiated his revolution in discovering die microbiological cause of tuberculosis, when die direat of'overspill' of tuberculosis 3 from die poor was perceived to be great, public anxiety


The four ethical principles of beneficence, non-maleficence, autonomy and justice are all highly valued both in Europe and the USA. 8 ' 9 However, it can be argued that some of these principles are given greater weight, are more revered, in the USA than in Europe.10'11 In the USA the cultural emphasis on individualism and autonomy is substantial and it is, in particular, this reverence for autonomy which is strained when individuals' deviant behaviour threatens or is perceived to threaten public health. In other words, when respect for one individual's autonomy (not to comply with tuberculosis treatment, in this instance) brings them into conflict with others' autonomy or right to be free from unnecessary healdi threats, then the strains become visible, not least through the adoption of novel legislative or regulatory approaches. This is what happened in New York in the early 1990s with regard to controlling 'delinquent' non-compliant patients with tuberculosis. In this arena, die rugged individualism, self-sufficiency and disrespect for audiority, American characteristics which are so admired, should have been tempered by communitarian principles of respect for odiers, a recognition of medical if not social authority and an acceptance of a burden (that is, prolonged treatment) on behalf of both tuberculous individuals themselves and others. The alternative, once a public healdi direat was perceived, was removal from society.

increased and coercive measures were assumed in order to reduce diis risk. In order to pursue dieir public healdi policy, healdi officials direatened and used dieir power to confine diose who were 'liable to jeopardize die healdi of odiers'. The commitment of those widi tuberculosis was viewed as 'a valid exercise pf die police power of die state'.12 Few people protested against diis use of audiority since it was used largely against vagrants and uneducated immigrants. Paternalistic approaches were die order of die day despite a lack of evidence of benefit to either die patient or die wider community.13 Charles Chapin, a contemporary of Biggs, noted with regard to die beneficent effects of treatment of die time diat, 'Our business, daily and hourly, leads us to die depletion of men's pockets and die restriction of their liberty. We cannot expect die dianks of diose who feel diemselves aggrieved' (p. 6). Biggs concurred diat diese approaches were 'evidently beneficent in their effects' (p. 158).15 Medical paternalism was in the ascendency. Public opinion, public health fashions and political persuasion have changed widi regard to paternalistic approaches to public health and diis change was most obvious in die Liberal era. This shift can be clearly seen in die field of mental health across both Europe and the USA. In addition to financial considerations over the cost of massive institutionalization, concerns were raised that patients were not benefiting from such an approach. In addition and most importantly, involuntary commitment was seen as an infringement of civil rights. A change in opinion towards die incarceration of the mentally ill occurred such that detention could not be justified for non-dangerous, mentally ill individuals. The autonomy of die mentally ill individual should be respected, where they did not pose a threat to others. Building upon civil libertarian notions, when HIV reared its ugly head in the 1980s, die USA embraced voluntarism in relation to testing and partner notification. Throughout the twentieth century there has been increasing recognition that a patient's autonomy should be respected across the spectrum in public health. Further evidence for diis can be found in die sphere of HIV and AIDS policies, where patients' autonomy is often viewed as sacrosanct. However, a change in attitudes to public health may be occurring in both Europe and die USA. Mandatory partner notification of patients with HIV has been enthusiastically pursued by some in the USA recently, and diis has occurred at a time when heterosexual transmission from poor drug users is threatening; measures to force psychiatric out-patients to comply with medication through 'assertive out-reach teams' in the face of uncertainty over the magnitude of threat posed are being contemplated in die UK and USA. It can be argued that traditional public healdi mores are once again being readopted. However, we should be cautious. Recourse to such overt legal methods of coercion signifies a failure of policies to enhance community cohesion where more subtle forces to constrain behaviour play out. The introduction and

Commentaries implementation of legal sanctions signifies a wider failure of policies, policies which should enhance integration and be socially inclusive, rather than exclusive and alienating.

CONTEMPORARY USA In 1996 The Washington Post ran a series of front page articles highlighting the research findings of a national survey. In the first article entitled" 'Americans Losing Trust in Each Other and Institutions' the overall findings were summed up thus: 'America is becoming a nation of suspicious strangers, and this mistrust of each other is a major reason Americans have lost confidence in the federal government and virtually every odier major national institution' (p. Al). 1 7 In response to the question 'Would you say that most people can be trusted V only 35% agreed.17'18 In a similar survey conducted 30 years earlier 54% had given this answer.18 Compounding the distrust in institutions, the civic ties which bind one to another are increasingly being stressed. Social mistrust is deepening. In addition to temporal changes in the level of distrust and social disintegration, not surprisingly cross-sectional variations have occurred. The levels of distrust are not uniform across the country and where there is wide inequality, so mistrust is amplified.19 On this basis one should not be surprised to see mistrust amplified in cities such as New York and Los Angeles, precisely diose cities with substantial numbers of 'delinquent' tuberculous patients.20 In the New York of the 1980s, with its great disparities of income and wealth and desperate urban poverty neighbouring ostentatious affluence, communities became fractured and individuals became more and more insular.21 With the scourge of drugs, poor economic opportunities and the corresponding rise in crime, fear exacerbated this sense of isolation and distrust. The social changes occurring nationally were writ large in New York. And this increase in mistrust was compounded by other cultural changes. Three powerful forces, ideology, affluence and cultural heterogeneity, have conspired to make the USA the individualistic capital of the world. If this is so then New York City, the cultural and media capital of the USA, where in addition those whose behaviour is most eccentric often feel drawn, is also the individualistic capital of the USA. In the past this emphasis on individualism has been tempered by the strength of social groups highlighted by associational membership, which wasreferredto by Putnam, for example, in his acclaimed essay, 'Bowling Alone: America's Declining Social Capital'. In part some of the tension between collectivism COERCION and individualism may relate to a popular misunderstandSo how does society respond to the centrifugal forces ing of what individualism means. To many it is a moral encouraging autonomy, separating individuals from one ideal; it describes a personal search for self-fulfilment or, another, fracturing groups and reducing community in Taylor's diction, 'authenticity'. However another spirit? As in physics, with equal and opposite forces. meaning and one which has become widely if erroneously Principally with recourse to the law. The force of law has accepted, is an amoral phenomenon. Individualism here replaced subtler community forces. And, it appears to me, means egoism, self-centredness and the narrow pursuit of as those communal forces become ever weaker, the force


happiness with little regard for others or one's responsibilities to society, what one might call indifferent autonomy. The rise of this second type of individualism or social atomism brings with it chaos and anomie. The 'recalcitrant', non-compliant individual with tuberculosis is perhaps, therefore, simply exhibiting a behavioural trait at the end of a spectrum which is revered in the West, that of individualism. This should not come as a surprise. Conflicting messages are sent from societies which encourage diversity of opinion and behaviour, a scepticism of authority, individuality (both moral and amoral) and the rejection of conformity, compliance and deference, whilst at the same time breaking the implicit social forces, the social networks, which constrain destructive aberrant behaviour. This emphasis on individualism also determines, more broadly, in subliminal ways, social policy in the USA. Americans more than others tend to individualize success, failure and inequality. These result from individual differences, talents and will rather than circumstances. If someone is successful it is because of who they intrinsically are or what they did. The advantages that society laid before them were inconsequential. This belief means that institutionalized social inequities (in contrast to violated individual rights) are hard to remedy. This individualization of policy also has consequences for those at the bottom of the heap. Just as those who 'succeeded' did it on their own, those who 'failed' also did it on their own. They failed because diey did not try hard enough or were unlucky enough to be born with insufficient talent. Opportunities were open to them, they just did not grasp them. This emphasis on individual autonomy, self-reliance, individual responsibility and decline in community spirit has meant that social support programmes are increasingly dividing the 'deserving' from the 'undeserving'. However, what is not emphasized is societal obligations. Inequities responsible for failing to broaden equal opportunities receive little attention (or little action) — which is somewhat surprising because Americans believe passionately in equality, particularly when it comes to raising children or to political rights. Indeed, a society grounded in a commitment to equality of opportunity, a meritocracy, in addition to the possibility of a better life for each succeeding generation, is what defined James Truslow Adams' 'American dream'. Equality of opportunity is one of the cornerstones of the USA's national personality. However, as Hochschild" and others have shown, in a land dedicated to opportunity there is a sizeable gap between the rhetoric and reality.

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CONCLUSION In recent years in the USA (as is now occurring in the UK and perhaps elsewhere in Europe), at least in mental health law and policy, there has been a significant shift from protecting individual rights to protecting the community. Individual autonomy, although still prized more highly than in most nations, is being constrained in the public health arena because of concerns for public health despite the many uncertainties over the magnitude of the \M true risk. Policy towards recalcitrant, non-compliant

individuals with tuberculosis may simply be another illustration of this shift. In many ways the story of tuberculosis in New York City simply illustrates how an affluent society can still be plagued by a centuries-old preventable and curable disease of poverty. The epidemic and the occurrence of drug-resistant strains on the scale seen in the city highlighted the fragmented nature of the US social, welfare and health care systems of the 1980s and earlier. The introduction of HIV merely served to bring the inadequacies to attention more rapidly. Little consideration was given to changing the factors which underlay the epidemic and the difficulties in responding to it, such as overcrowding, homelessness, poverty and the loss of social capital. The response which occurred illustrated the lack of options available to well-meaning, enthusiastic public health officials and served to highlight the political inertia surrounding support for the most needy. Given the circumstances in the early 1990s, the uncertainties that abounded and the potential consequences of misjudging the seriousness of the epidemic, public health officials had little option other than to implement coercive health measures in support of their efforts to improve treatment completion rates and compliance. Marginalized, chaotic individuals rather than society as a whole paid the price for uncertainty and those forces which alienated so many persist. The tuberculosis epidemic of New York City was and is more complex than simply the result of underfunding of a tuberculosis programme and, likewise, the response to it demands a broader and more complex approach. Tuberculosis can be controlled by expending vast sums of money in patching up the holes in the social fabric (tuberculosis control in New York has cost well over one $1 billion), just like other public health threats can similarly be responded to in this 'Band-Aid' fashion. However, the fundamental causal weaknesses persist and these need to be recognized so that different parts of a slowly disintegrating garment are not constantly being patched up. Public health should not respond in a vacuum. This is not public health 'nihilism' but an attempt to argue that politics can and should play a role in the development of a more just, less-divided society and that this will benefit both society itself, individuals currently most susceptible to coercive practices and . public health. As Dostoevsky succinctly noted, 'We are all responsible for all'. The UK and the rest of Europe should take note. With increasing inequality, a political shift towards emphasizing personal responsibility and, at least in the UK, an increasing emphasis on self-fulfilment and individualism (perhaps best illustrated by the life and death of Princess Diana), public health, despite political assertions, threatens to become more narrow in its scope. In 1993, the World Health Organization referred to tuberculosis as a 'global emergency' and described measures to enhance compliance with treatment with DOTS as no less than a 'breakthrough'.26 How those reluctant to comply with treatment elsewhere will be encouraged is unclear. Each society should, I believe, effect control


of calls for sterner and stiffer sanctions increase in amplitude. The fear of lawlessness demands sterner discipline. By developing policies from an individualistic slant, in fractured communities with weakening cohesive social bonds, it is perhaps simply a natural extension to view those on the margins as 'different'. The bonds of common sympathy become weaker and emphasis shifts from a communal common purpose with shared responsibilities to the promotion of special interests and a change of perspective from 'us' to 'them and us'. There is a great paradox, it seems to me, underpinning the use of coercion in the control of tuberculosis in the USA. If one could describe the characteristics of the typical individual detained because of poor treatment compliance he or she would be poor, Black, HIV infected, homeless and an ex-felon and would likely have a drug problem.25 That is, one would be hard pressed to describe any group of individuals less 'deserving' of assistance in contemporary USA. If tuberculosis was not contagious, but simply caused ill-health in the poor and underprivileged, there can be little doubt that such focused public health efforts would not have been mounted. It was because of the infectious nature that the disease demanded such an aggressive response. It threatened to overspill. After all, the recognition of high mortality rates from otJier causes in ghettos has not resulted in such focused national public health efforts or expenditure. The paradox arises because Americans, as De Tocqueville noted 150 years ago, are singularly concerned with their well-being. As a people they are extremely health conscious. Furthermore, they are highly sensitive to risks, particularly when those risks are novel or borne involuntarily. These features make health hazards such as HIV and tuberculosis and other contagious diseases particularly compelling for policy makers, the media and general public alike. This combination of health consciousness and 'victim blaming' usually causes few ripples because the two 'ideologies' rarely cross. However, with a contagious disease which affects 'them', particularly when transmission to 'us' can occur 'through no fault of our own', then public anxiety rises and demands a response. This response requires great expenditure ironically on those who are 'undeserving'. Therefore, that response is focused narrowly upon those who may be the cause of contagion rather than upon the causes of the conditions from which it arose.

Commentaries programmes by drawing lessons from both successes and failures elsewhere, such as New York, contextualizing those lessons and, subsequently, applying measures which are culturally appropriate. Politics and public health should be inextricably and explicitly intertwined. In terms of global control of tuberculosis, perhaps more important than political will is a redistributive political mandate to eradicate societal inequities and enhance social cohesion. This commentary is a substantially abridged version of several chapters in the book From Chaos to Coercion: detention and the control of tuberculosis by the author and published by St. Martin's Press, New York. This work was carried out m the United States in 1997-1998 while the author was in tenure of a Harkness fellowship, supported by The Commonwealth Fund, a New York City-based private foundation. The views presented here are those of the author and not necessarily those of The Commonwealdi Fund, its directors, officers or staff.

Received 13 July 1998, accepted 15 September 1999


1 Frieden TR, Fujiwara PI, Washko RM, Hamburg MA. Tuberculosis in New York City: turning the tide. N Engl J Med 1995;333:229-33. 2 El-Sadr W, Medard F, Dkkerson M. The Harlem family model: a unique approach to the treatment of tuberculosis. J Public Hlth Manage Pract 1995;1(4):48-51. 3 Information summary. New York City: Bureau of Tuberculosis Control, New York City Department of Health, 1996. 4 Banta HD. What is hearth care? In: Kovner AR, editor. Hearth care delivery in the United States. New York: Springer, 1990. 5 Coker RJ. Carrots, sticks and tuberculosis. Thorax 1999,54:95-6. 6 Sepkowitz KA. How contagious is tuberculosis? Clin Infect Dis 1996;23:954-62. 7 Alexius B, Heilbrunn U, Beck B, Wistedt B. Involuntarily detained HIV-infected patients in Sweden: reasons for referral and psychiatric diagnoses. Med Law 1995;14:491-5O0. 8 Beachamp TL, Childress JF. Principles of biomedical ethics, 4th edn. New York: Oxford University Press, 1994. 9 Gillon R. Philosophical medical ethics. Chichester: John Wiley & Sons, 1986.

10 Gaylin W, Jenings B. The perversion of autonomy: the proper uses of coercion and constraints in a liberal society. New York. NY: The Free Press, 1996. 11 Holm S. Not just autonomy: the principles of American biomedical ethics. J Med Ethics 1995;21:332-8. 12 Tobey JA. Public hearth law, 3rd edn. New York: The Commonwealth Fund, 1947. 13 Fairchild AL, Oppenhelmer GM. Public hearth nihilism versus pragmatism: history, politics, and the control of tuberculosis. Am J Public Hlth 1998;88(7):1-14. 14 Gorham FP, editor. Papers of Charles V. Chapin, M.D. New York: The Commonwealth Fund, 1934. 15 Winslow C-EA. The life of Hermann Biggs. Philadelphia, PA: Lea and Febiger, 1929. 16 Bayer R. Private acts, social consequences: AIDS and the politics of public health. New York, NY: The Free Press, 1989. 17 Morln R, Balz D. Americans losing trust in each other and institutions. The Washington Post 1996;28 January.A1,A6. 18 Brodie M. The four Americas: government and social policy through the eyes of America's multi-racial and murti-ethnic society. Menlo Park: The Washington Post/Kaiser Family Foundation/Harvard University Survey Project, 1995. 19 Kawachi I, Kennedy BP, Lochner K, Prothrow-Stith D. Social capital, income inequality, and mortality. Am J Public Hlth 1997;87(9):1491-8. 20 Brudney K, Dobkin J. A tale of two cities: tuberculosis control in Managua and New York City. Sem Respirat Infect 1991;6:261-72. 21 Wallace R, Wallace D. Origins of public hearth collapse in New York City: the dynamics of planned shrinkage, contagious urban decay and social disintegration. Bull NY Acad Med 1990;66(5):391-434. 22 Putnam RD. Bowling alone: America's declining social capital. J Democracy 1995;6(1):65-78. 23 Taylor C. The ethics of authenticity. Cambridge: Harvard University Press, 1991. 24 Hochschild JL Equal opportunity and the estranged poor. In: Wilson WJ, editor. The ghetto underclass. Newbury Park: Sage Publications, 1989:160-72. 25 Feldman G, Srivastava P, Eden E, Frieden TR. Detention until cure as a last resort New York City's experience with involuntary in-hospital civil detention of persistently nonadherent tuberculosis patients. Sem Respirat Crit Care Med 1997,18