Institutionalization and Deinstitutionalization
INSTITUTIONALIZATION AND DEINSTITUTIONALIZATION•••
Deinstitutionalization, the mass exodus of mentally ill persons from state hospitals into the community, was accomplished in the United States during the seventh and eighth decades of the twentieth century. The process has taken away from persons with long-term, severe mental illness the almost total asylum from the pressures of the world and the care, however imperfect, that they received in these institutions. The central ethical question is: Does society not have an obligation to provide the care and treatment that they need in the community? The fact that a significant proportion of the severely and persistently mentally ill population is now living in the streets, in jails, and in other squalid conditions is evidence that adequate community care has not been provided. Moreover, it may be that some mentally ill persons who cannot be effectively treated in the community have been deinstitutionalized. Does society not have an obligation to correct this situation as well?
Before the current era of deinstitutionalization, persons with long-term, severe mental illness were usually institutionalized for life in large state mental hospitals. This institutionalization often began after a first acute mental breakdown in adolescence or early adulthood. Sometimes these patients went into remission in the hospital and were discharged, but at the point of their next psychotic episode were rehospitalized, often never to return to the community.
In the 1960s, British social psychiatrist John Wing and others observed that persons who spent long periods in mental hospitals developed what has come to be known as institutionalism, a syndrome characterized by lack of initiative, apathy, withdrawal, submissiveness to authority, and excessive dependence on the institution (Wing and Brown). Sociologist Erving Goffman argued that in what he called total institutions, such as state mental hospitals, impersonal treatment can strip away a patient's dignity and individuality and foster regression. The deviant person is locked into a degraded, stigmatized, deviant role. Goffman and others believed that the social environment in institutions could strongly influence the emergence of psychotic symptoms and behavior.
Other investigators, however, observed that institutionalism may not be entirely the outcome of living in dehumanizing institutions; at least in part, it may be characteristic of the schizophrenic process itself. With deinstitutionalization, these researchers observed that many persons with long-term, severe mental illness who were liable to institutionalism seemed to develop dependence on any other way of life that provided minimal social stimulation and allowed them to be socially inactive. They gravitated toward a lifestyle that allowed them to remain free from symptoms and painful and depressive feelings.
Is this dependent, inactive lifestyle bad? For many deinstitutionalized persons, it may lead to unnecessary regression and impede their social and vocational functioning; thus, for these patients it should be discouraged. However, this restricted lifestyle may meet the needs of many deinstitutionalized individuals and help them stay in the community. Mental-health professionals and society at large need to recognize the crippling limitations of mental illness that do not yield to current treatment methods. They also need to be clear about the importance of providing adequate care for this vulnerable group of severely mentally ill persons so that the end result is not like the fate of the mentally ill in the back wards of state hospitals—neglect, abysmal conditions, extreme regression, and marked deterioration of their mental states. For those persons who can be restored to social and vocational functioning only to a degree, many mental-health professionals advocate lowered expectations and the provision of reasonable comfort and a dignified, undemanding life.
The Origins of Deinstitutionalization
In 1955, the number of persons in state hospitals in the United States reached its highest point: 559,000 persons were institutionalized in state mental hospitals out of a total national population of 165 million. In 1998, there were approximately 57,000 institutionalized persons out of a population of 275 million. In 43 years, the United States reduced its number of occupied state hospital beds from 339 per 100,000 population to 21 per 100,000. Some individual states have gone even further: in California in 2000, for example, there were 9 state hospital beds per 100,000 population, including forensic patients (committed through the legal system); nonforensic beds numbered only 3 per 100,000.
Until the deinstitutionalization movement, state mental hospitals had fulfilled the function for society of keeping the mentally ill out of sight and thus out of mind. At the same time, before the advent of modern psychoactive medications, the controls and structure provided by the state hospitals—as well as the granting of asylum—may have been necessary for many of the long-term mentally ill. Unfortunately, the ways in which structure and asylum were achieved, and the everyday abuses of state hospital life such as neglect, abysmal living conditions, and deterioration of the patients' mental states, left scars on the mental-health professions and on the reputation of state hospitals, as well as on the patients. Periodic public outcries about these deplorable conditions, documented by journalists such as Albert Deutsch in his influential book The Shame of the States (1948), set the stage for deinstitutionalization. These concerns, shared by mental-health professionals, led to the formation by Congress of the Joint Commission on Mental Illness and Health (1961), which issued recommendations for community alternatives to state hospitals. When psychoactive medications appeared in the 1950s, along with a new philosophy of social treatment, the majority of the long-term psychotic population seemed to have been left in an institutional environment that was no longer necessary or even appropriate.
Other factors also came into play. First, the conviction that mental patients receive better and more humanitarian treatment in the community than in state hospitals far away from home was a philosophical keystone of the community mental-health movement. Another motivating force was concern that the system of indefinite commitment and institutionalization of psychiatric patients deprived them of their civil rights. Finally, many financially strapped state governments wished to shift some of the fiscal burden for these patients to federal and local governments, that is, to federal Supplemental Security Income (SSI) and Medicaid, and to local law-enforcement and emergency-health and mental-health services.
Two developments at the federal level accelerated the process of deinstitutionalization in 1963. Under the provisions of categorical Aid to the Disabled (ATD), the Secretary of Health, Education, and Welfare issued an administrative order making the mentally ill eligible for federal financial support in the community. Moreover, Congress passed legislation to facilitate the establishment of community mental-health centers. With ATD, psychiatric patients and mental-health professionals acting on their behalf now had access to federal grants-in-aid, in many places supplemented by funding from the state. This enabled patients to support themselves or be supported either at home or in such facilities as board-and-care homes (boarding homes) or old hotels, at little cost to the state. ATD is now the Supplemental Security Income referred to above, and is administered by the Social Security Administration. Instead of maintaining patients in a state hospital, the states, even those that provided generous ATD supplements, found the cost of maintaining these patients in the community to be far less than the cost of maintaining them in state hospitals. Although the amount of money available to patients under ATD was not a princely sum, it was sufficient to pay for a board-and-care home or to maintain a low standard of living elsewhere in the community.
Many individuals in the community discovered that they could earn substantial additional income by taking former mental patients into their homes, even at the rates allowed by the ATD grants. Some entrepreneurs set up board-and-care homes holding as many as one hundred persons or more in large, old houses and converted apartment buildings and rooming houses. Although these board- and-care-home operators were not skilled in the management of psychiatric patients, they were able to accommodate tens of thousands of persons who had formerly been in state hospitals and who did not now have major behavior problems (primarily because they were being treated with the antipsychotic drugs).
In 1963, too, Congress passed the Mental Retardation Facilities and Community Mental Health Centers Construction Act, amended in 1965 to provide grants for the initial costs of staffing newly constructed centers. This legislation was a strong incentive to the development of community programs with the potential to treat people whose main recourse previously had been the state hospital. However, although rehabilitative services and pre-care and aftercare services were among the ten services eligible for funding, an agency did not have to offer them in order to qualify for funding as a comprehensive community mental-health center. Many community mental-health centers chose to focus on persons with neuroses and problems of living— the healthy but unhappy. Persons with long-term, severe mental illness were often just as neglected in the community as they had been in the hospitals.
Sweeping changes in the commitment laws of the various states also contributed to deinstitutionalization. In California, for instance, the Lanterman-Petris-Short Act of 1968 provided further impetus for the movement of patients out of hospitals. Underlying this legislation was a concern for the civil rights of the psychiatric patient. (Much of this concern came from civil rights groups and individuals outside the mental-health professions.) The act made the involuntary commitment of psychiatric patients a much more complex process, and holding psychiatric patients indefinitely against their will in mental hospitals became much more difficult. Thus, the initial stage of what had formerly been the career of the long-term hospitalized patient—namely, an involuntary, indefinite commitment— became a thing of the past.
Deinstitutionalization in Practice
One of the most important lessons to be drawn from the experience with deinstitutionalization was almost totally unforeseen by its advocates. The most difficult problem is not the fate of those patients discharged into the community after many years of hospitalization. Rather, the problem that has proved most vexing and that has presented the most difficult ethical dilemmas has been the treatment of the generation that has grown up since deinstitutionalization. It is largely from this generation that the homeless mentally ill are drawn. The large homeless population with major mental illness—that is, schizophrenia, schizoaffective disorder, bipolar illness, and major depression with psychotic features—tends to be young.
Why is this so? In the older generation of long-stay, hospitalized patients, chances were that most of those who were least appropriate for discharge—because of their propensity to physical violence, very poor coping skills, or marked degree of manifest pathology—were not discharged, or if they were discharged and failed in the community, were be sent into the community again.
Those who have been hospitalized for long periods have been institutionalized to passivity. For the most part, they have come to do what they are told. This is not presented as a beneficial effect of long-term hospitalization, but simply as a clinical observation. When those for whom discharge from the hospital is feasible and appropriate are placed in a community living situation with sufficient support and structure, most (though by no means all) tend to stay where they are placed and to accept treatment.
Long-term, severely mentally ill persons of the new generation, however, have not been institutionalized to passivity. Not only have they not spent long years in hospitals, they have probably had difficulty just getting admitted to an acute hospital, whether or not they wanted to be admitted, and even greater difficulty staying there for more than a short period on any one admission. Acute psychiatric inpatient care is extremely expensive, and there is a great reluctance to use scarce mental-health funds to provide it.
Existential Problems in the Community
A young person just beginning to deal with life's demands struggles to achieve some measure of independence, to choose and succeed at a vocation, to establish satisfying interpersonal relationships and attain some degree of intimacy, and to acquire some sense of identity. Lacking the abilities to withstand stress and to form meaningful interpersonal relationships, the mentally ill person's efforts often lead only to failure. The result may be a still more determined, often frantic effort with a greatly increased level of anxiety and desperation. Ultimately, this may lead to another failure accompanied by feelings of despair. For a person predisposed to retreat into acute mental breakdowns, the result is predictably stormy, with acute psychotic breaks, and repeated—and usually brief—hospitalizations often related to these desperate attempts to achieve. The situation becomes even worse when such persons are in an environment where unrealistic expectations emanate not just from within themselves, but also from families and mental-health professionals.
Before deinstitutionalization, these new long-term patients would have been institutionalized, often from the time of their first mental breakdown in adolescence or early adulthood. After their initial failures in trying to cope with the vicissitudes of life and of living in the community, such patients would have been exposed no longer to these stresses, but given a permanent place of asylum from the demands of the world.
Such an approach now tends to be the exception, not the rule; since large-scale deinstitutionalization began, hospital stays tend to be brief. In this sense, the majority of new long-term patients are the products of deinstitutionalization. To observe this is not to imply that society should turn the clock back and return to a system of total institutionalization for all persons with long-term, severe mental illness. In the community, most of these patients can have something very precious—their liberty, to the extent they can handle it. Furthermore, if the resources are provided, they can realize their potential to pass some of life's milestones successfully. Nevertheless, it is this new generation of long-term, severely mentally ill persons that poses the greatest ethical challenge to deinstitutionalization and the most difficult clinical problems in community treatment, and that has swelled the ranks of the homeless and the incarcerated mentally ill.
Problems in Treatment
As recently as 1950, there were no psychoactive drugs to bring long-term, severely mentally ill persons out of their world of autistic fantasy and help them return to the community. Even today, many patients fail to take psychoactive medications because of disturbing side effects, denial of illness, or, in some cases, the desire to avoid the depression and anxiety that result when they see their reality too clearly; grandiosity and a blurring of reality may make their lives more bearable than a drug-induced relative normality.
A large proportion of the new long-term patients tends to deny the need for mental-health treatment and to eschew the identity of the long-term mental patient. Admitting mental illness seems to many of these persons to be admitting failure. Becoming part of the mental-health system seems to them like joining an army of misfits. Many of these persons also have substance-abuse disorders and/or medicate themselves with street drugs. Another contributing factor is the natural rebelliousness of youth.
The problem becomes worse for those whose illnesses are more severe. These persons' problems are again illustrated by the problems of the homeless mentally ill. Evidence is beginning to emerge that the homeless mentally ill are more severely ill than the general mentally ill population. At Bellevue Hospital in New York City, for example, approximately 50 percent of inpatients who were homeless on admission are transferred to state hospitals for long-term care as a result of the severity of their illnesses, as opposed to 8 percent of other Bellevue psychiatric inpatients.
Functions of the State Hospital
Valid concerns about the shortcomings and antitherapeutic aspects of state hospitals in the United States often overshadowed the fact that the state hospitals fulfilled some crucial functions for persons with long-term, severe mental illness. The term asylum was in many ways appropriate: these imperfect institutions did provide asylum and sanctuary from the pressures of the world with which, in varying degrees, most of these persons were unable to cope. They also provided medical care, patient monitoring, respite for the patient's family, and a social network for the patient, as well as food, shelter, and needed support and structure.
Furthermore, in the state hospitals, the treatment and services that did exist were in one place and under one administration. In the community the situation is very different. Services and treatment are under various administrative jurisdictions and in various locations. Even the mentally healthy have difficulty dealing with a number of bureaucracies, both governmental and private, and having their needs met. Patients can easily get lost in the community. In a hospital, they may have been neglected, but at least their whereabouts were known.
These problems have led to the recognition of the importance of case management. Many of America's homeless mentally ill would not be on the streets if they were on the caseload of a professional or paraprofessional trained to deal with the problems of persons with long-term, severe mental illness, monitor these persons (with considerable persistence when necessary), and facilitate their receiving services.
The fact that persons with long-term, severe mental illness have been deinstitutionalized does not mean they no longer need social support, protection, and relief, either periodic or continuous, from external stimuli and the pressures of life. In short, they need asylum and sanctuary in the community. Unfortunately, because the old state hospitals were called asylums, the word asylum took on an almost sinister connotation. Only in recent years has the word again become respectable, signifying the function of providing asylum, rather than asylum as a place.
The concept of asylum and sanctuary in the community becomes important in post-discharge planning because, while some long-term, severely mentally ill persons eventually attain high levels of social and vocational functioning, others have difficulty meeting simple demands of living on their own, even with long-term rehabilitative help. Whatever degree of rehabilitation is possible for each patient cannot take place unless support and protection in the community—from family, treatment program, therapist, family-care home, or board-and-care home—are provided at the same time. Moreover, if the need for asylum and sanctuary within the community is not taken into account, many persons with long-term, severe mental illness may find it impossible to live in the community.
Ingredients of a System of Community Care
Has community care in the United States been better than institutionalized care for persons with long-term, severe mental illness? The answer appears to be both yes and no. With deinstitutionalization, for instance, some long-term dysfunctional and mentally disordered individuals gradually, over a period of years, succeed in their strivings for independence, a vocation, intimacy, and a sense of identity. For them, deinstitutionalization has indeed been a success. The deinstitutionalization movement has also taught administrators much about what good community care should be: a comprehensive and integrated system of care, with designated responsibility, accountability, and adequate fiscal resources.
More specifically, such care requires an adequate number and ample range of graded, stepwise, supervised community-housing settings; adequate, comprehensive, and accessible psychiatric and rehabilitative services provided assertively and through outreach services when necessary; and available and accessible crisis services. A system of responsibility for persons with long-term, severe mental illness living in the community should ensure that each patient has one case manager, a mental-health professional or paraprofessional who is responsible for seeing that the appropriate psychiatric and medical assessments are carried out. This case manager should formulate, in collaboration with the patient, an individualized treatment and rehabilitation plan, including the proper pharmacotherapy; monitor the patient; and assist him or her in receiving services. Respite care, a period when families can be relieved of the responsibilities of caring for their mentally ill relatives, is needed for the more than 50 percent of the long-term, severely mentally ill population in the United States who live with their families, so that the family is better able to provide a support system. The entire burden of deinstitutionalization should not be allowed to fall on families, as it sometimes has.
Setting up such a comprehensive and integrated system of care for persons with long-term, severe mental illness in the United States has proven far more difficult to accomplish than was envisioned. A large proportion of the many hundreds of thousands of persons with long-term, severe mental illness has not been well served in the community. In addition, some patients who cannot be effectively treated in the community have been deinstitutionalized. Probably only a relatively small minority of long-term mentally ill persons requires a highly structured, locked, twenty-four-hour setting for adequate intermediate or long-term management. But for members of this small minority, such institutional management may be critical—for their sake and for the sake of the community. Attempts to treat persons characterized by such problems as assaultive behavior; severe, overt major psychopathology; grossly inappropriate social behavior; reluctance to take psychoactive medications; inability to adjust to open settings; problems with drugs and alcohol; and self-destructive behavior in the community have required an inordinate amount of time and effort from mental-health professionals, various social agencies, and the criminal-justice system. Many patients have been lost to the mental-health system because their treatment needs have not been met, and these people, for the most part, are on the streets or in jail.
The result has often been seen as a series of failures on the part of both mentally ill persons and mental-health professionals. As a consequence, a number of long-term mentally ill persons have become alienated from the system that has not met their needs, and some mental-health professionals have become disenchanted with the treatment of these persons. The heat of the debate in the United States over the issue of whether or not to provide intermediate and long-term hospitalization has tended to obscure the benefits of community treatment for the great majority of the long-term mentally ill, who do not require such highly structured, twenty-four-hour care.
Where to treat—hospital versus community—should not be an ideological issue; it is a decision best based on the clinical needs of each person. Unfortunately, efforts to deinstitutionalize have, in practice, too often confused locus of care with quality of care. Where mentally ill persons are treated has been seen as more important than how they are treated. Care in the community has often been assumed by definition to be better than hospital care. In actuality, poor care can be found in both hospital and community settings.
For many long-term mentally ill persons, nothing is more difficult to attain and sustain than independence. The issue of supervised versus unsupervised housing provides an example. Professionals would like to see their patients living in their own apartments and managing on their own, perhaps with some outpatient support. But, as described in the 1992 American Psychiatric Association Task Force's report on the homeless mentally ill, the experience of deinstitutionalization has shown that most long-term, severely mentally ill persons living in unsupervised mainstream housing in the community find the ordinary stresses of managing on their own more than they can handle. After a while they tend to not take their medications and to neglect their nutrition. Their lives unravel; eventually they find their way back to the hospital or to the streets.
Mentally ill persons value independence highly, but they often underestimate their dependency needs and their needs for structure—for instance to have a living situation where their medication is dispensed to them and their meals are provided. Professionals need to be realistic about their patients' potential for independence, even if the patients are not.
What about the issue of freedom? Persons with long-term, severe mental illness enjoy much more liberty than when they were institutionalized; in most cases, as was discussed earlier, this is appropriate. But that freedom may well be damaging to some patients if they are given more than they can handle. Many of those on the streets and in the jails suffer from the lack of structure and organization in their lives; they need, because of their illnesses, to have these elements imposed upon them.
However, involuntary treatment presents an extremely difficult ethical dilemma. Beliefs about civil liberties come into conflict with concerns for the welfare of persons with long-term, severe mental illness. A basis for facing this dilemma is provided by the belief that the mentally ill have a fundamental right to treatment, even if at times the treatment must be involuntary when, because of severe mental illness, they present a serious threat to their own welfare or that of others and are not able to make a rational decision about accepting treatment. Reaching out to patients and working with them to accept help on a voluntary basis is certainly a mandatory first step. But if this fails and the patient is at serious risk, professionals with direct responsibility for patients usually see that ethically they cannot simply stop there.
In such cases, humane commitment laws facilitate a prompt return to acute inpatient treatment when such treatment is needed. Ongoing measures, such as conservatorship or guardianship, court-mandated outpatient treatment, and appointing a payee for the person's disability check are components of a treatment philosophy and practice that recognizes that external controls such as these are a positive therapeutic approach for mentally ill persons who lack the internal controls to deal with their impulses and to cope with life's demands. Such external controls may help interrupt a self-destructive, chaotic life on the streets and in and out of jails and hospitals.
Further deinstitutionalization must be preceded by careful planning and the establishment of community services. In fact, community services set up in the United States have in most cases been swamped by the number of patients coming out of the hospitals or who are already in the community and in need of care. Clearly, deinstitutionalization should be implemented only to the extent that each long-term, severely mentally ill person in the community can be properly and adequately housed and treated. This should also be done for those mentally ill persons already in the community. Those who implement a policy of deinstitutionalization must take into account not only those still in hospitals but those mentally ill persons who are reaching an age where their mental illness is becoming manifest and who will never be long-term hospitalized mental patients.
For this latter group, it is essential that there be a system of case management with staff who understand their problems and their needs, as well as a range of supervised housing in the community that is sufficiently structured to accommodate those who require it. Although adequate case management, appropriate housing, and treatment should greatly decrease the need for involuntary treatment, there should still be a willingness to use it when it becomes necessary. It also needs to be recognized that there is a significant subpopulation of persons with long-term, severe mental illness who should not be deinstitutionalized.
Having dismantled such a large proportion of the institutions for the mentally ill, society surprisingly continues to face the grave ethical and clinical question of whether there is still an obligation to provide care and treatment in the community for the mentally ill persons who used to inhabit these institutions. It is a matter of priorities among the various social needs of our society. Mental-health professionals, at least those in public service, are coming around to giving this population the highest priority. With regard to legislators and the general public, there is much more ambivalence, and persons with long-term, severe mental illness often fare poorly in the struggle over setting priorities and allocating funds.
h. richard lamb (1995)
revised by author
SEE ALSO: Autonomy; Beneficence; Coercion; Mental Health Services; Mental Health Therapies; Mentally Disabled and Mentally Ill Persons: Healthcare Issues; Paternalism; Patients' Rights: Mental Patients' Rights; Psychiatry, Abuses of
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