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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 Mental Health Policy: The Next 25 Years by Gerald N. Grob, Ph.D. Henry E. Sigerst Professor of the History of Medicine, Institute for Health, Health Care Policy, and Aging Research, Rutgers University The creation of the Institute of Medicine (IOM) a quarter of a century ago was no accident. By that time there was a broad consensus that health and medical science were inseparably linked, and that future advances would require a partnership consisting of the public and their elected representatives, the scientific community, and the medical profession. That the IOM has played an important role during these years is obvious. Yet in celebrating its silver anniversary, we run the risk of emphasizing its past contributions while neglecting to consider its role during the next 25 years. My goal in this paper, therefore, is to shed light on the past in a way that opens the possibility for greater achievements in the future. The work of the IOM in the mental health field has centered on studies dealing with health, mental health, and behavior; the growing significance of the neurosciences; and the problems associated with substance abuse. The focus has been on treatment and prevention (even though prevention remains problematic), whereas relatively little attention has been devoted to studies of the ways in which we provide care to people whose chronic illness leads to dependency. In this respect the IOM has been typical of the medical profession generally, which has usually emphasized a commitment to treatment, as contrasted with care. Such a commitment rests upon the belief that presumably objective knowledge and biological reductionism are central to medical practice. In some ways this perception reflects an important gender distinction;
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 objectivity is masculine and care is feminine, and the former is always valued more than the latter. Let me offer a perspective on mental health issues that differs somewhat from the analysis presented by Dr. Pechura in “Healing the Mind–Body Split.” I begin by emphasizing a critical but often ignored point, namely, that chronic disabling illness is the central health problem facing American society. By definition, chronic disorders are unlike acute bacterial infectious diseases. The latter are short-lived and generally curable; the former are of long duration, often impair the functions of organs and cause disability, and usually require a judicious combination of treatment and care that minimizes (but does not necessarily eliminate) the underlying pathology and the disabilities that follow. Such disorders as schizophrenia, for example, erode the ability of people to deal with “personal hygiene and self-care, self-direction, interpersonal relationships, social transactions, learning and recreation,” which in turn prevent them from becoming economically self-sufficient.1 Since there is no “magic bullet” to cure schizophrenia and eliminate the disabilities that follow, we rely on a judicious mixture of psychiatric interventions (e.g., drugs) and systems of care. The same comments apply as well to many chronic conditions, including those associated with cardiovascular disorders and malignant neoplasms. Health policy as it relates to the severely and chronically mentally ill, therefore, must be conceptualized within a framework that includes the traditional emphasis on prevention and treatment, but accepts as well the need for care. Indeed, severe mental disorders require the integration of health policy and social policy. The challenge to the IOM is to promote the kind of broad-based studies that will enable us to modify our health care system to accommodate the varied needs of those who suffer from chronic disorders that involve disability. Beginning with this observation, let me offer a somewhat different perspective on mental health policy in the decades following the end of World War II. After World War II mental health policy underwent a dramatic transformation. In mid-nineteenth-century America the asylum was widely regarded as the symbol of an enlightened and progressive nation that no longer ignored or mistreated its insane citizens. The justification for asylums appeared self-evident: they benefited the community, the family, and the individual by offering effective medical and psychological medical treatment for acute cases and humane custodial care for chronic cases. In providing for the mentally ill, the state met its ethical and moral responsibilities and, at the same time, contributed to the general welfare by limiting, if not eliminating, the spread of disease and dependency. After World War II, by way of contrast, mental hospitals began to be perceived as the vestigial remnants of a bygone age. Increasingly, the emphasis was on prevention and the provision of care and treatment in the community.
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 Indeed, the prevailing assumption was that traditional mental hospitals would disappear as community alternatives and institutions came into existence. Immediately following the end of the war a broad coalition of psychiatric and lay activists began a campaign to transform mental health policy. The initial success came in 1946 with the enactment of the National Mental Health Act. This novel law made the federal government an important participant in an arena traditionally reserved for the states. The passage of the Community Mental Health Centers Act in late 1963 (signed into law by President Kennedy just prior to his death) culminated two decades of agitation. The legislation provided federal subsidies for the construction of centers, which were intended to be the cornerstone of a radically new policy. In short, centers were supposed to facilitate early identification of symptoms, offer preventive treatments that would both diminish the incidence of mental disorders and prevent long-term hospitalization, and provide integrated and continuous services to severely mentally ill people in the community. Ultimately, such centers would render traditional mental hospitals obsolete. Hailed as the harbingers of a new era, community mental health centers (CMHCs) failed to live up their promise. Admittedly, appropriations fell far below expectations because of the budgetary pressures engendered by the Vietnam War. More importantly, CMHCs served a different population. Most centers made little effort to provide coordinated aftercare services and continuing assistance to severely and persistently mentally ill persons. They preferred to emphasize psychotherapy, an intervention especially adapted to people with emotional and personal problems, as well as one that appealed to a professional constituency. Even psychiatrists in community settings tended to deal with more affluent neurotic patients, as compared with severely mentally ill persons. Equally significant, the focus of federal policy shifted dramatically during the 1970s because of a growing perception that substance abuse (particularly drugs and, to a lesser extent, alcohol) represented major threats to the public at large. Beginning in 1968, Congress enacted legislation that sharply altered the role of centers by adding new services for substance abusers, children, and elderly persons. Congress believed that the Community Mental Health Centers Act had resolved most of the major problems of the mentally ill and that greater attention should be paid to other groups in need of mental health services. As the services provided by centers proliferated, the interests of the severely and persistently mentally ill—clearly the group with the most formidable problems—slowly receded into the background. The inauguration of Richard Nixon in 1969 altered the political environment. Between 1970 and 1972, his administration worked assiduously to scale back National Institute of Mental Health (NIMH) programs, many of which survived only because of a sympathetic Congress. By 1973, however, the Watergate scandal was preoccupying the attention of the White House, and its
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 interest in mental health policy issues virtually disappeared. Nixon 's resignation in the summer of 1974 was welcomed by those concerned with mental health policy issues, if only because he was perceived as an opponent of any significant federal role in shaping and financing services. In the months preceding and following Nixon's resignation, Congress undertook a reassessment of the CMHC program. The result was the passage of a mental health law in mid-1975 over President Gerald Ford's veto. Yet this legislation—which expanded the role of CMHCs—never addressed the fundamental issue of providing for the basic human and medical needs of the severely mentally ill. The inauguration of Jimmy Carter as president in 1977 introduced a new element of hope. In one of his first acts, Carter signed an executive order creating the President's Commission on Mental Health to review national needs and to make necessary recommendations. Yet the commission's final report offered at best a potpourri of diverse and sometimes conflicting recommendations. Eventually Congress passed the Mental Health Systems Act a month before the 1980 presidential election. Its provisions were complex and in some respects contradictory. Nevertheless, the law suggested at the very least the outlines of a national system that would ensure the availability of both care and treatment in community settings. The Mental Health Systems Act had hardly become law when its provisions became moot. The election of Ronald Reagan to the presidency led to an immediate reversal of policy. Preoccupied with reducing both taxes and federal expenditures, the new administration proposed a 25 percent cut in federal funding. More importantly, it called for a conversion of federal mental health programs into a single block grant to the states carrying few restrictions and without policy guidelines. The presidential juggernaut proved irresistible, and in the summer of 1981 the Omnibus Budget Reconciliation Act was signed into law. Among other things, it provided a block grant to states for mental health services and substance abuse. At the same time, it repealed most of the provisions of the Mental Health Systems Act. The new legislation did more than reduce federal funding for mental health; it reversed nearly three decades of federal involvement and leadership. In the ensuing decade the focus of policy and funding shifted back to the states and local communities, thus restoring in part the tradition that had prevailed until World War II. The transfer and decentralization of authority, however, exacerbated existing tensions; federal support was reduced at precisely the same time that states were confronted with massive social and economic problems that increased their fiscal burdens. Disagreements over national mental health policy were but one development that had major repercussions. Equally significant, states during and after the 1970s accelerated the discharge of large numbers of severely and persistently mentally ill persons from public mental hospitals. The origins of “deinstitutionalization.”—a term that is both imprecise and misleading —are
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 complex. Prior to World War II, responsibility for care and treatment had been centralized in public asylums. Under the policies adopted during and after the 1960s, however, responsibility was diffused among a number of different programs and systems. The failure of CMHCs to assume the burdens previously shouldered by state hospitals, for example, magnified the significance of the medical care and entitlement systems. General hospitals with and without psychiatric wards began to play an increasingly important role in treating the mentally ill. Because such persons tended to be unemployed and thus lacked either private resources or health insurance, their psychiatric treatment was often financed by Medicaid. Similarly, responsibility for their care (i.e., food, clothing, and shelter) was slowly subsumed under the jurisdiction of federal entitlement programs. A paradoxical result followed. The fragmentation of what had once been a unified approach to mental illnesses was accompanied by an expansion of resources to enable seriously mentally ill persons to reside in the community. During and after the 1960s, deinstitutionalization was indirectly sanctioned by the judiciary when federal and state courts began to take up long-standing legal issues relating to the mentally ill. Judicial decisions, however significant, merely confirmed existing trends by providing a legal sanction for deinstitutionalization. The pattern of discharging patients from mental hospitals after relatively brief stays was driven after 1970 by the expansion of federal entitlement programs having no direct relationship with mental health policy. States began to take advantage of a series of relatively new federal initiatives that were designed to provide assistance for a variety of disabled groups and thus facilitate their maintenance in the community. The elderly were among the first to be affected by new federal policies. Immediately following the passage of Medicaid in 1965, states began to shift the care of elderly persons with behavioral symptoms from mental hospitals to chronic care nursing facilities. Such a move was hardly the result of altruism or a belief that the interests of aged persons would be better served in such institutions. On the contrary, state officials were predisposed to the use of nursing homes because a large part of the costs were assumed by the federal government. The quality of care in such facilities (which varied in the extreme) was not an important consideration in transferring patients. Indeed, the relocation of elderly patients from mental hospitals to extended care facilities was often marked by increases in the death rate. Moreover, many nursing homes provided no psychiatric care. During the 1960s the population of nursing homes rose from about 470,000 to nearly 928,000, largely as a result of Medicaid. A study by the General Accounting Office in 1977 noted that Medicaid was “one of the largest single purchasers of mental health care and the principal Federal program funding the long-term care of the mentally disabled.” It also was the most significant “federally sponsored program affecting deinstitutionalization.”2 De-
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 signed to provide services for the elderly and indigent, therefore, Medicaid (as well as Medicare) quickly became one of the largest mental health programs in the United States. Other federal programs had an equally profound effect on the nonelderly mentally ill. In 1956 Congress had amended the Social Security Act to enable eligible persons age 50 and over to receive disability benefits. The Social Security Disability Insurance (SSDI) program continued to become more inclusive in succeeding years and ultimately covered the mentally disabled. In 1972 the Social Security Act was further amended to provide coverage for people who did not qualify for benefits. Under the provisions of Supplemental Security Income for the Aged, the Disabled, and the Blind (more popularly known as SSI), all those whose age or disability made them incapable of holding a job became eligible for income support. This entitlement program was administered and fully funded by the federal government; its affiliation with Social Security had the added virtue of minimizing the stigmatization often associated with welfare. The existence of SSI and SSDI encouraged states to discharge severely and persistently mentally ill persons from mental hospital10s, since federal payments would presumably enable them to live in the community. Those who were covered under SSI also became eligible for coverage under Medicaid. In addition, public housing programs and food stamps added to the resources of mentally ill persons residing in the community. The expansion of federal entitlement programs hastened the discharge of large numbers of institutionalized patients during and after the 1970s. This trend was reflected in the changing pattern of mental hospital populations. Despite the introduction of psychotropic drugs, the decline in inpatient populations between 1955 and 1965 was modest, falling from 559,000 to 475,000. The decreases after 1965 were dramatic; between 1970 and 1986 the number of inpatient beds in state and county institutions declined from 413,000 to 119,000. The length of stays dropped correspondingly. In theory, the combination of entitlement programs and access to psychiatric services outside of mental hospitals should have fostered greater state financial support for community programs. The presumption was that a successful community policy would eventually permit the consolidation of some mental hospitals and closure of others, thus facilitating the transfer of state funds from institutional to community programs. In practice, however, state mental hospitals proved far more resilient than their critics anticipated. Some had powerful support among community residents and employees who feared the dramatic economic consequences that would accompany closure. A shrinking inpatient census, therefore, sometimes led to rising per capita expenditures, since operating costs were distributed among fewer patients. Equally important, there remained a seemingly irreducible group of people who were so disabled that institutional care appeared to be a necessity. Using data collected by the NIMH, the authors of one study concluded that there ap-
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 peared “to be a core of some 100,000 residents for whom there is no alternative to state hospital treatment.”3 In retrospect, mental health policy changed dramatically after 1965, but not in the manner envisaged by those active in its formulation. After World War II there was a decided effort to substitute an integrated community system of services for traditional mental hospitals. The system that emerged in the 1970s and 1980s, however, was quite different. First, mental hospitals did not become obsolete even though they lost their central position. They continued to provide both care and treatment for the most severely disabled part of the population. Second, community mental health programs expanded dramatically, and inpatient and outpatient psychiatric services became available in both general hospitals and CMHCs. A significant proportion of their clients, howevers, represented new populations that did not fall within the seriously mentally ill categories. Finally, a large part of the burden of supporting severely mentally ill persons in the community fell to a variety of federal entitlement programs that existed quite apart from the mental health care system. Since the 1970s, therefore, severely and persistently mentally ill persons have come under the jurisdiction of two quite distinct systems—entitlements and mental health—that often lacked any formal programmatic or institutional linkages. Whatever its contradictory and tangled origins, deinstitutionalization had positive consequences for a large part of the nation's severely and persistently mentally ill population. Data from the Vermont Longitudinal Research Project offered some dramatic evidence that people with severe mental illness who were provided with a range of comprehensive services could live in the community. A variety of other experiments have confirmed that individuals with severe mental disorders prefer and do better in community settings that dispense economic resources (particularly vocational rehabilitation) and a kind of empowerment that provides a feeling of mastery rather than a sense of dependency. Under the best of circumstances, deinstitutionalization would have been difficult to implement. The multiplication of programs and absence of formal integrated linkages, however, complicated the task of both clients and those responsible for providing care and treatment. Moreover, the decades of the 1970s and 1980s were hardly propitious for the development and elaboration of programs to serve disadvantaged populations such as the severely and persistently mentally ill. The dislocations and tensions engendered by the Vietnam War, the rise of antigovernment ideologies, and an economic system that no longer held out as great a promise of mobility and affluence all combined to create a context that made experimentation and innovation more difficult. The founding of the National Alliance for the Mentally Ill in 1979 helped in part to redress the balance. It brought together families of the mentally ill in an advo-
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 cacy organization that began to play an increasingly important role in the politics of mental health during and after the 1980s. As a policy, deinstitutionalization was based on the premise that the population found in mental hospitals was relatively homogeneous. The first major wave of discharges came after 1965, and occurred among a group of people who had been institutionalized for relatively long periods of time or else had been admitted later in their lives. This phase was not controversial nor did it create difficulties, since few of these people seemed to pose a threat to others. After 1970 a quite different situation prevailed due to basic demographic trends in the population as a whole and changes in the mental health service system. At the end of World War II there was a sharp rise in the number of births that peaked in the 1960s. Between 1946 and 1960, more than 59 million births were recorded. The disproportionately large size of this age cohort meant that the number of persons at risk for developing severe mental disorders was very high. Moreover, younger people tended to be highly mobile. Whereas 40 percent of the general population moved between 1975 and 1979, between 62 and 72 percent of people in their 20s changed residences. Like others in their age cohort, large numbers of young adult severely and persistently mentally ill persons also moved frequently both within and between cities and in and out of rural areas. At the same time that the cohort born after 1945 was reaching their 20s and 30s, the mental health service system was undergoing fundamental changes. Prior to 1970, persons with severe and persistent mental disorders were generally cared for in state hospitals. If admitted in their youth, they often remained institutionalized for decades or else were discharged and readmitted. Hence their care and treatment was centralized within a specific institutional context, and in general they were not visible in the community at large. Although chronically mentally ill persons were always found in the community, their relatively small numbers posed few difficulties and in general did not arouse public concern. After 1970, however, a subgroup of the severely mentally ill—composed largely of young adults—was adversely affected by the changes in the mental health service system. Young chronically mentally ill persons were rarely confined for extended periods within mental hospitals. Restless and mobile, they were the first generation of psychiatric patients to reach adulthood within the community. Although their disorders were not fundamentally different from those of their predecessors, they behaved in quite different ways. They tended to emulate the behavior of their age peers, who were often hostile toward conventions and authority. The young adult mentally ill exhibited aggressiveness and volatility, and were noncompliant. They generally fell into the schizophrenic category, although affective disorders and borderline per-
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 sonalities were also present. Above all, they lacked functional and adaptive skills. Complicating the clinical picture were high rates of alcoholism and drug abuse among these young adult chronic patients, which only exacerbated their volatile and noncompliant behavior. Their mobility and lack of coping skills also resulted in high rates of homelessness. Many of them traveled and lived together on the streets, thereby reinforcing each other's pathology. Virtually every community experienced the presence of these young adult chronically ill individuals on its streets, in emergency medical facilities, and in correctional institutions. Recent estimates have suggested that perhaps one-quarter to one-third of the single adult homeless population has a severe mental disorder. Many have a dual diagnosis of severe mental illness and substance abuse. Studies of these people found that they had experienced extremely harsh living conditions, were demoralized, granted “sexual favors for food and money,” and were often caught up in the criminal justice system. They had few contacts with their families; were often victimized and socially isolated; mistrusted people and institutions; and were resistant to accepting assistance. Such patients tended to arouse negative reactions from mental health professionals, if only because chronicity and substance abuse contradicted the medical dream of cure. Deinstitutionalization was largely irrelevant to many of the young patients who were highly visible after 1970. They had little or no experience with prolonged institutionalization and hence had not internalized the behavioral norms of a hospital community. To be sure, many of the norms of patienthood in institutions were objectionable, but at the very least they provided people with some kind of structure. Lacking such guidance, many young chronic mentally ill patients— especially those with a dual diagnosis—developed a common cultural identity quite at variance with the society in which they lived. The mobility of such people, the absence of a family support system, and programmatic shortcomings complicated their access to such basic necessities as adequate housing and social support networks. The dearth of many basic necessities of life further exacerbated their severe mental disorders. Ironically, at the very time that unified, coordinated, and integrated medical and social services were needed to deal with a new patient population, the policy of deinstitutionalization had created a decentralized system that often lacked any clear focus and diffused responsibility and authority. A superficial analysis of the mental health scene in the recent past can easily lead to depressing conclusions. The combined presence of large numbers of young adult chronic mentally ill individuals as well as larger numbers of homeless people undoubtedly reinforced feelings of public apprehension and professional impotence. Indeed, the popular image of mental illnesses and of the mental health service system was often shaped by spectacular exposés in
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 the media—visual and printed—that seemed to reveal sharp and perhaps irreconcilable tensions. In them could be seen the conflict between absolutist definitions of freedom and other humanitarian and ethical principles, as well as the concerns that the well-being, if not the very safety, of the community seemed endangered. The image of deinstitutionalization so often portrayed by the media nevertheless represented a gross simplification that ignored a far more complex reality. The popular image of severely and persistently mentally ill adults who used drugs, wandered the streets of virtually every urban area, threatened residents, and resisted treatment and hospitalization was true but represented only a subgroup of a much larger seriously mentally ill population. Often overlooked were innovative programs that were specifically designed to deal with the severely and chronically mentally ill in the 1970s and 1980s. Some of the initial results in the early 1980s of community support system programs were encouraging. These programs served a chronic population, and those with the greatest needs were the beneficiaries. Outward appearances to the contrary, the condition of many severely and persistently ill persons improved during the remainder of the decade as many states attempted to integrate such federal entitlement programs as SSDI, SSI, Medicaid, and Medicare with community mental health services. Nevertheless, the impact of these developments was often overshadowed by massive problems posed by homelessness, the presence of people who were both severely mentally ill and substance abusers, and an angry and sometimes alienated public fearful that its security was being endangered. A quite different perspective on community programs became evident during the 1970s and 1980s. From World War II to the 1960s, community mental health had been portrayed in terms of an all-embracing panacea; its supporters employed rhetoric and largely ignored the absence of a body of empirical data that might validate their assertions. Exaggerated claims inevitably prepared the ground for a reaction that threatened to inhibit or undermine efforts to deal with the needs of a severely disabled population. In succeeding decades, by contrast, community care and treatment came to have a quite different meaning. The focus on cure and prevention, although still pervasive, became less significant. The emphasis shifted to the need to limit disability and to preserve function. Moreover, advocates of experimental community programs were more prone to concede that cure, independence, and total integration into normal society were often not achievable, and that many (but not all) severely and persistently mentally ill persons might require comprehensive assistance and services for much of their adult lives. In sum, the challenge was to create a system that provided all of the elements incorporated into traditional mental hospitals, but without the liabilities that accompanied protracted institutionalization.
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 The integrated and comprehensive community programs created during and after the 1970s provided evidence of the difficulties that lay ahead. To administer a program responsible for a variety of different patients proved a formidable undertaking, especially in view of the need to deal with multiple sources of funding. It was neither inexpensive nor easy to replicate elsewhere the results achieved in any given community. Yet, at the very least, such programs offered guidelines. Perhaps the best known of the community mental health care programs was developed in Madison, Wisconsin, by Leonard Stein, Mary Ann Test, and others. Its origins went back to the late 1960s, when efforts were made to combat the negative effects of long-term hospitalization, which tended to infantilize patients and reduce them to a state of near total dependency. Although subject to debate, the results of the Madison experiment seemed to suggest that it was possible for highly impaired persons to be cared for in the community (though not necessarily at less cost than in other settings). There were a number of attempts to replicate the Madison model both in the United States and abroad. Most had to make significant alterations, if only because of the existence of important differences between Madison and the areas in which the model was duplicated. The most consistent finding was that assertive community care and treatment reduced hospitalization. The meaning of this finding, however, remained unclear. Were reductions in hospitalization, for example, accompanied by compensatory increases in other forms of supervision? Did such programs shift burdens to the families of patients? Until these and other questions were answered, the relevance of the Madison experiment remained murky. Moreover, there were fundamental differences between Madison and much larger urban areas; what was effective in the former was not necessarily applicable to the latter. In an effort to improve services to the chronically mentally ill population, the Robert Wood Johnson Foundation—the nation's largest foundation concerned with health—created the Program on Chronic Mental Illness in 1985. Under this program, nine cities were given resources to create a central mental health authority to deliver services to chronically mentally ill persons. Preliminary findings suggested that in the nine cities selected, services were being directed toward the care of the severely and persistently mentally ill; that a central authority was more likely to be concerned with the ways in which the system as a whole was serving client needs rather than being preoccupied with individual programs; that centralization improved levels of financial support; and perhaps most important, that change was possible. Whether or not the Robert Wood Johnson Program on Chronic Mental Illness and others will succeed in redressing existing shortcomings remains an open question. “There is no quick fix for the problems that plague public mental health systems,” David Mechanic conceded. “The problems are deeply entrenched and difficult to solve. Many public officials are concerned that investments in mental health
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 will not yield significant visible benefits that justify taking political risks.” Nevertheless, he insisted that the integration of different strategies—including the integration of assertive community treatment, approaches that unified diverse sources of funding and directed them toward meeting the needs of disabled persons, strong local mental health authorities, and rational reimbursement structures—offered at least the potential for improvement.4 The persistence of problems, however, should not be permitted to conceal the more important fact that a large proportion of severely and persistently mentally ill persons have made a more or less successful transition to community life as a result of the expansion of federal disability and entitlement programs. To be sure, the media and the public are prone to focus on a subgroup of young adults who have a dual diagnosis of mental illness and substance abuse and who tend to be homeless. Their visibility on the streets often overshadows the inadvertent success of “deinstitutionalization.” “In fact,” two authorities have recently written, “the situation is indeed much better for many people, and overall it is much better than it might have been. . . . While many people still do not have adequate incomes or access to the services theoretically provided through Medicaid and Medicare, the fact that the structure exists within these federal programs to meet the needs of these individuals represents a major step forward.”5 If American society is to deal effectively, compassionately, and humanely with the seriously mentally ill, we must acknowledge that this group includes people with quite different disorders, prognoses, and needs. Moreover, outcomes vary considerably over time. Some schizophrenics, for example, have reasonably good outcomes; others lapse into chronicity and become progressively more disabled. We must also confront the evidence that serious mental disorders are often exacerbated by other social problems of a nonmedical nature—poverty, racism, and substance abuse. Although psychiatric therapies can alleviate symptoms and permit people to live in the community, there is no magic bullet that will cure all cases of serious mental illnesses. Like cardiovascular, renal, and other chronic degenerative disorders, serious mental disorders require treatment as well as systems of care. Serious mental illnesses can strike at any time and among all elements of the population. The ensuing impact on the individual, family, and society is immense, for it often leads to disability and dependency. Rhetorical claims to the contrary, little is known about the etiology of serious mental disorders. The absence of curative therapies, however, does not mean that we cannot alleviate some of the adverse consequences of illness. Many therapies assist seriously ill persons in coping with and managing their condition. “In the last analysis,” a group of investigators recently concluded, “systems of treatment are not as yet able to cure, but they should be able to remove the obstacles that stand in the way of natural self-healing processes.”6
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 Mental health policies have often embodied an elusive dream of magical cures that would eliminate age-old maladies. Psychiatrists and other professionals have justified their raison d'être in terms of cure and overstated their ability to intervene effectively. The public and its elected representatives often accepted without question the illusory belief that good health is always attainable and purchasable. The result has been periods of prolonged disillusionment that have sometimes led to the abandonment of severely incapacitated persons. Public policy has thus been shaped by exaggerated claims and by unrealistic valuative standards. Chronic illnesses have often been considered within an overly narrow framework that overlooked the human needs of those falling into this category. To put the matter somewhat differently, a commitment to scientific research does not preclude a consideration of ethical and moral issues. All societies, after all, have an obligation toward people whose disability leads to partial or full dependency. Indeed, to posit an absolute standard of cure leads to a paralyzing incapacity to act despite evidence that programs that integrate mental health services, entitlements, housing, and social supports often minimize the need for prolonged hospitalization and foster a better quality of life. The challenge to the IOM in the mental health field in the next quarter of a century is to broaden its traditional (and legitimate) concerns with treatment and prevention by recognizing that serious and chronic mental disorders (in the absence of curative treatments) require social as well as medical interventions. If it can foster an appreciation of the profound problems associated with chronic disorders of all varieties, it will justify its continued presence in the future. NOTES 1. This is the definition used by the group that formulated a national agenda at the close of the Carter presidency. See Department of Health and Human Services. 1980. Toward a National Plan for the Chronically Mentally Ill. Washington, D.C.: Department of Health and Human Services. 2. General Accounting Office. 1977. Returning the Mentally Disabled to the Community: Government Needs to Do More. Washington, D.C.: General Accounting Office, p. 81. 3. Goldman, H.H., Adams, N.H., and Taube, C.A.. 1983. Deinstitutionalization: The data demythologized. Hospital and Community Psychiatry 34:129–34. 4. Mechanic, D. 1991. Strategies for integrating public mental health services. Hospital and Community Psychiatry 42:797–801. 5. Koyanagi, C., and Goldman, H.H. 1991. The quiet success of the National Plan for the Chronically Mentally Ill. Hospital and Community Psychiatry 42:904. 6. Harding, C.M., Zubin, J., and Strauss, J.S. 1987. Chronicity in schizophrenia: Fact, partial fact, or artifact? Hospital and Community Psychiatry 38:483.
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 Biobehavioral Sciences and Health: The Institute of Medicine's Enduring Leadership by David A. Hamburg, M.D. President, Carnegie Corporation of New York, New York City The social inventiveness of the Institute of Medicine (IOM) lies in its ability to mobilize members of the health sciences and professions and those in related fields in broadly composed committees to address major questions of national and world health as carefully and objectively as humanly possible. The IOM's fundamental mission is to help find ways to improve the health of the public—a wide-ranging mandate. In approaching this mission, it is open to evidence and ideas from all sources pertinent to its task. It does not advocate the special interests of any profession, science, or other segment of the public. It views the health community as an integral part of society and seeks a useful interplay with all sectors of society that can contribute to the health of the public. The scope of IOM's activities flows naturally from this conception of its basic mission. The Institute is concerned with policies bearing upon the major facets of health: patient care, disease prevention, education, and the science base underlying the whole enterprise. What have been the principal substantive thrusts of the IOM's 25 years? A comprehensive list would be rather long, but I think it is useful to keep in mind six recurrent themes that are by now probably intrinsic elements of the Institute's work:
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 Monitoring progress in health, giving recognition to extraordinary accomplishment in fostering such progress, and highlighting promising lines of inquiry and innovation. Drawing attention to serious health problems and to neglected people. Fostering the scientific revolution bearing on health, and seeking ways to broaden it. Promoting mutual stimulation of the health services and health sciences. Seeking to prevent disease where possible, and to find better ways of preventing disease in the future. Taking a worldwide perspective on disease in the context of nutrition, population, and international relations—with special attention to the enormous burden of illness in developing countries. The IOM's committees have the combined competencies to examine critically the complex factors influencing health and the policies and programs designed to promote health. The multiplicity of disciplines represented in each committee ensures that a broad range of evidence and ideas are taken into account. The goals of the committees usually are (1) to develop intelligible, credible syntheses of research relevant to health policy issues; (2) to make objective, science-based analyses of policy options, taking into account the social and economic realities faced in implementing proposals; (3) to provide a broadly based, long-term view when analyzing policy questions; and (4) to disseminate information on health policy to scientific and professional groups, policymakers, and the general public. These are ambitious goals, but a quarter-century's experience shows that they are not beyond reach. At the heart of these efforts is a broad conception of the life sciences and their role in improving health. The life sciences include effective inquiry at every level of biological organization: molecules, cells, organisms, populations, and behavior. During the IOM's history, basic research has become richer than ever before in its implications for clinical investigators. By the same token, clinical observations have provided a powerful stimulus for fundamental inquiry. Just as Avery, MacLeod, and McCarty's curiosity about pneumonia led them to their Pneumoccocus transformation experiments and hence to the discovery that DNA is the molecular basis for heredity, curiosity about stress-related disorders has led to fundamental progress on neuropeptides—and to insights into the relation of behavior to health. A powerful stimulus to research, public education, and health practice has evolved in recent decades from the growing realization that much of the world 's burden of illness is behavior related. Historically, behavior has been the most neglected level of biological inquiry, and yet it is an exceedingly important one. Behavior plays a fundamen-
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 tal role in the survival and reproduction of complex organisms, above all in human primates. Behavior has evolved as the principal means of relating an organism to its surroundings and dealing with vital matters such as food, water, shelter, sex, defense, and child-rearing. Only a few decades ago, there was much pessimism in the scientific community about the possibility of major advances in research on the brain and behavior, and little interest in the significance of such research for health. Yet it is possible now to trace some paths along which formidable obstacles were overcome and valuable insights emerged. One line of inquiry—going back about a century—provides a useful illustration. This is the curiosity about the ways in which living organisms, especially humans, adapt to very difficult circumstances—that is, their responses to stressful experiences. This curiosity has led in many directions that range far from its point of origin. It shows how advances in neurobiology stimulate the scientific study of behavior and how behavioral questions challenge the neurosciences. These observations are of special interest in view of the rapidly growing body of evidence that behavioral factors weigh heavily in the contemporary burden of illness. In history, let alone in evolution, several decades constitute only a brief moment of time. Yet research published regularly in 1995 would have been totally out of the question in 1970 when the Institute was founded. At that time, we lacked the fundamental knowledge and the interdisciplinary cooperation needed to make possible a useful contribution of basic research in behavioral biology to health interventions. Now a new generation of investigators is based firmly on the ground of first-rate scientific training, abundant research accomplishments, rich clinical experience, and interdisciplinary cooperation. They have constructed a valuable guide to the mysterious territory of human behavioral biology. This work increasingly highlights an area of immense human suffering in which the burden of disease is beginning to be lifted. The IOM's major commitment to this field over the years has surely done no harm. The American experience provides reason for some hope that changing behavior can improve health. The most vivid example of this involves risk factors for cardiovascular disease. We have addressed this problem seriously in the United States, in part through informal education, through the media, and through our free institutions with their relative openness to new evidence. In significant part also, this results from the strength of our scientific community. For example, a large fraction of the world's information on risk factors for cardiovascular disease has been generated in the United States. Moreover, we have been in the vanguard of developing the scientific study of behavior and connecting it with our strong biomedical research enterprise. Epidemiological research over decades established the risk factors for cardiovascular disease, and behavioral scientists have studied ways in which such
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 significant, yet threatening information could be usefully conveyed to those in the general population who need it most. Over the past three decades, there has been a considerable reduction in the risk factor behavior that contributes to cardiovascular disease on a per capita basis among adults, especially among relatively highly educated people. They have reduced levels of smoking and fat intake while increasing exercise and preventive care of hypertension. The resulting decline in mortality from coronary heart disease is especially striking because it occurred after a sustained period of rising death rates from this cause that extended well into the first half of this century. Despite such progress, rates of morbidity, disability, and premature death from preventable heart diseases remain very high in the United States and throughout the world. A great deal remains to be done. The unprecedented success of basic research in the neurosciences provides a continuing flow of illuminating glimpses, however unpredictable in nature and tempo, into the most wondrous of machines, the human brain. The promise of neuroscientific research for socially useful applications in health and education is strong. Exposure to clinical or social problems can be an exceedingly stimulating experience for basic scientists—as has been so clearly the case in genetics as well as in the neurosciences. Yet the promise cannot be fulfilled without moving to higher levels of cooperation—not only among the neuroscientific disciplines but more broadly across the sciences. To obtain depth in understanding, it is necessary to focus sharply. Consequently, many scientific disciplines and subdisciplines have arisen. Yet there are risks to such deep specialization, essential though it is, and ways are being found to cope with these risks. Within the life sciences, interdisciplinary cooperation is rapidly becoming the norm. Through such cooperation we are beginning to weave research on fragments of the nervous system into a coherent, integrated neuroscience. Nowhere is this accomplishment more apparent than in behavioral neurochemistry, where the intimate interplay of basic and clinical research is generating advances in diagnosing mental disorders, creating useful animal models of mental illness, and understanding behavior. Moreover, advanced technologies such as computerized axial tomography, positron emission tomography, computer-assisted electroencephalography, magnetic resonance imaging, and spectroscopy have opened new windows on the brain and behavior and provide powerful tools for studying brain function in living animals and intact people. Yet there are more hurdles to be overcome—the inherent complexity of the subject matter, old conceptual rigidities like the mind–body dichotomy, proper ethical limitations on experimental control in human research, ancient prejudices against objective inquiries into human behavior, dogmatic social ideologies, and institutional inertia that retards any kind of major change. Thus, in recent years the IOM, with its broad integrative capability, has been increasingly addressing the potential of the neurosciences for health.
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For the Public Good: Highlights from the Institute of Medicine, 1970–1995 Science policy is not exempt from such strictures. I can remember vividly when the emerging discipline of biochemistry was viewed with suspicion by chemists as “weak chemistry” and by biologists as “weak biology.” Today this hybrid discipline has flowered into molecular biology and has become the central discipline of biomedical research. A few decades ago, many leaders in medicine were highly skeptical about the future of genetics. Today genetics is one of the most dynamic areas of biomedical research and has growing clinical uses. Similarly, the conventional wisdom of that era discouraged investigation of neuroendocrinology and neurochemistry, and scoffed at the idea of the brain controlling the circulation. Even more, that misguided wisdom discouraged the scientific study of behavior in its own right, especially psychosocial aspects of behavior. When it comes to any central dogma in science policy, modesty becomes us. A very wide spectrum of research is needed to meet long-range health problems. We are now entering an era during which we will evaluate the extent to which scientific methods can be brought to bear on the entire range of factors that affect and determine health and delineate well-tested diagnostic, therapeutic, and preventive interventions. This requires excellent basic science at every level of biological organization, a dynamic interplay between basic and applied science, a widening of horizons to include new or neglected lines of inquiry, and an enduring commitment to the scientific study of human behavior. The IOM's reports have presented informed assessments by committees composed of leaders in the biomedical and behavioral sciences that integrate information from many disciplines, both basic and clinical. They have highlighted promising lines of scientific inquiry pertinent to understanding, treating, and preventing behavior-related components of the burden of illness. They have dealt with diverse problems including smoking, alcohol and drug abuse, stress, aging, cardiovascular diseases, diabetes, mental disorders, sleep, work force and work-related issues, and the connection between social and economic disadvantages and health. They indicate ways in which developmental influences during childhood and adolescence can shape healthy habits that can last a lifetime. They also show how a broadening of our understanding of the life sciences in the context of health and behavior can have a profound impact on the quality of health—and life—of the public in the next century.
Representative terms from entire chapter: