Psychiatric Deinstitutionalization: A Sociocultural Analysis

JOURNAL OF SOCIAL ISSUES VOLUME 37, NUMBER 3, 1981

Psychiatric Deinstitutionalization: A Sociocultural Analysis

Sue E. Estroff

University of Wisconsin-Madison

This paper analyzes deinstitutionalization and community treatment of psychiatric patients from a sociocultural perspective, discusses the social values and processes of the movement, and presents an overview of the experience of patients in the community. It argues that, in so- ciocultura1 terms, deinstitutionalization of the most needy patients has failed. Economic, clinical, and social hypotheses about why these failures have occurred are presented. The analysis suggests that deinstitutionalization has failed in large part because it did not address the sociocultural reasons for institutionalization.

The deinstitutionalization and community-based treatment of hundreds of thousands of psychiatric patients in the United States have been in process for nearly two decades. Clinicians and scholars with a variety of perspectives are engaged in assessing how the systems and policies we have created have affected patients and their relatives, treatment staffs, and communities intended to benefit from these complex and massive changes. At issue is not whether deinstitutionalization is good or bad, right or wrong, but rather how and why it succeeds and fails, in what areas, and with what intended and unintended consequences for whom. I will argue in this paper that in view of some fundamental explicit goals and implicit intentions, the deinstitutionalization of those psychiatric patients most in need has failed.

It has proven feasible to release many patients from institutions, and drastically to shorten or avoid hospitalization altogether for others (Test & Stein, 1978). Yet the movement has not succeeded in ameliorating precisely those alleged results of institutionalization that led to it: the sociocultural and interpersonal

Correspondence regarding this article may be addressed to Dr. Sue E. Estroff, Department of Psychiatry, Clinical Science Center, B6/220 600 Highland Avenue, Madison, WI 53792.

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isolation, degeneration, and stigmatization of patients; the assym- metrical dependency and vast power differentials between patients and non-patients; the encouragement of chronicity con- tained in the treatment system and related social policies. Ironically, deinstitutionalization was prompted by concern for the sociocultural circumstances of psychiatric patients, yet these are the areas in which we have been least successful and about which research has taught us the least.

In order to substantiate these observations, I will first discuss the sociocultural meaning, rationale, and goals of deinstitutionalization and community treatment. With this background, I will review available data about psychiatric patients living outside hospitals and explore hypotheses about why deinstitutionalization works and does not work, for which patients, under what circumstances. In conclusion, I present perspectives from sociocultural research in this area, and suggest treatment and policy alternatives that address issues currently neglected by program design, evaluation research, and olicy analysis.

Anthropological ana f ysis of deinstitutionalization and community treatment entails examining persons and circumstances at both individual and system-wide levels. Anthropologists seek to understand the individual's experience of illness and difficulty in living as they interact with and contribute to the sociocultural context. We look for factors among patients, their families, treatment personnel, and communities of residence, including treatment modalities, behaviors, beliefs about illness, and values con- cerning dependency, control, conformity, daily living, and personal conduct, that mutually mold the outcome and experience of deinstitutionalization for all concerned. In order to accomplish this, we acknowledge the autonomy and dependency, capabilities and deficiencies, intentions, interrelations, and values of patients, families, staff, and community members.

At a fundamental cultural level, the removal of persons from psychiatric institutions rests on our sometimes contradictory beliefs about the nature, cures, and causes of mental illness (Dun- ham, 1976). That is to say, treatment modalities express cultural notions about cause; represent hypotheses about how to fix something based on what we believe has gone awry (Fabrega, 1974; Kleinman, 1980). Specifically, deinstitutionalization rests on as-

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sumptions that the social structure, cultural content, and patterns of interpersonal relations in psychiatric hospitals can have harmful effects on patients, in lieu of or in conjunction with neuro- chemical or organic factors. Likewise, community and other psychosocial treatments presume that sociocultural factors in these contexts may be helpful to patients.

Clinical and social science research and patient accounts have informed but not tested the above assumptions, documenting that many patients in psychiatric hospitals became less able to cope with the stresses and rewards of life on the outside, did not experience significant or long lasting decreases in symptoms, and often found hospital life humiliating, controlling, and anti-therapeutic (Chamberlain, 1978). Simply said, we discovered that many patients were not 'getting better' in psychiatric hospitals, they were 'getting worse'-staying a long time, becoming dependent on staff and unwilling to care for themselves, adapting to hospital life and their own and other patients' incompetence and bizarreness. We have thought that hospitalization may be harmful because it disrupts patients' outside social networks, prompts exclusion from and rejection by families and communities, relieves patients of responsibility by communicating that they are sick and that others should care for them, produces an atrophy in daily living skills, creates a situation in which staff persons wield great power and patients may become overly dependent and compliant or degraded, and entails constant exposure to the distress, de- spair, and craziness of fellow patients (Ludwig, 1971). Essentially, we learned that creating closed communities of patients and staff within traditional medical and hospital sociocultural systems con- tributed to the social construction of a very crazy reality for patients.

Deinstitutionalization and community treatment also express and serve cultural values about human conduct in our society. These values include that: autonomy, choice, and interdependence are preferable to confinement, incompetence, and dependence; individual contentment is a worthwhile goal; one is best treated in the most natural setting with genuinely caring people; we all share social responsibility to include in our daily lives those who have special and sometimes negatively valued differences. Cultural values also dictate that being sick legitimizes temporary dependence and incompetence but requires visible, if not successful, attempts to get well (Parsons, 1972). Providing for one's own subsistence in culturally approved ways represents perhaps the most important measure of social competence and 'wellness'

SOCIOCULTURAL ANALYSIS

in our culture (Turner & Gartell, 1978). These processes, beliefs, and values form the cultural core

of deinstitutionalization and community treatment for psychiatric patients and provide a foundation for understanding and assessing how and why we have succeeded and failed. Before moving to the outcome data, it is necessary to know about the people who have been moved from hospitals to communities or treated as outpatients from the start.

It is important to distinguish among four potentially over- lapping categories of patients who are affected by deinstitutionalization. These are: 1) long-term hospital residents who were discharged; 2) patients with multiple psychotic episodes and hospital admissions who seek periodic asylum, support, and subsistence from hospitalization, now treated almost exclusively as outpatients with short, crisis-oriented admissions; 3) patients who have not had extensive inhospital experience but who are con- sistent consumers of outpatient treatment; and 4) first break or situationally distressed persons who may not be hospitalized now (or hospitalized only briefly) when they would have been before. The first two groups have been the focus of deinstitutionalization while the second two represent beneficiaries of preventive efforts.

The most severely and chronically distressed need and use the hospital the most and so would logically be the most affected by deinstitutionalization. Therefore, I will confine the discussion to the first two groups. They have been described by clinicians as mentally ill and therefore extremely dependent persons, de- ficient in daily living and coping skills, vulnerable to stress, experiencing difficulty in achieving close or symmetrical relations with others, and often unable to provide for their own subsistence, responding to problems in any of these areas by becoming symptomatic or psychotic (Test & Stein, 1978).

Alternatively, from a sociocultural perspective, these persons are negatively different; that is, they are different from the general population in negatively valued ways. For whatever reasons, they do not adhere to custom in activities such as work and relations with others, areas that represent carefully regulated func- tional facets of our social system. Their dependency and vulner- ability diverge from and challenge our values of interdependence and competency in coping. The persistence of their symptoms and needs are in conflict with conceptions of proper sick role

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behavior for it is not clear that they can or want to 'get well.' In sum, not only do these persons experience internal, psychological difficulties in thinking and feeling, but live in ways that are negatively valued in our sociocultural system. These ways of thinking, feeling, and living in turn elicit powerful social responses, be they caring or punishing.

COMMUNITY LIFE FOR DEINSTITUTIONALIZED PATIENTS. FACTS, FIGURES AND FAILURES

Most quantitative information about the above persons de- rives from outcome and evaluation research from various community treatment programs. Extensive reviews of this literature exist elsewhere (Anthony, Cohen & Vitalo, 1978; Bachrach, 1976; Beck, 1978; Mosher & Keith, 1979; Test & Stein, 1978), so I in- tend only to summarize it briefly here. With these data, we are unfortunately restricted to learning about those patients involved in some way in treatment, and are confined to data deemed col- lectable and/or pertinent by program researchers, funding agen- cies, and clinicians. Therefore I include research and analysis from outside the treatment system (e.g. Estroff 1981; Hammer, Makiesky-Barrow & Gutwirth, 1978; Segal & Aviram, 1978) that yields data which are more sociologically sophisticated and often more qualitative in nature.

Most patients in groups one and two have difficulty staying out of the hospital, but on the average they spend only 5-10% of their time, or about four weeks per year, as inpatients (Min- koff, 1978). The number of patients who relapse increases over time after baseline discharge: 25-30% relapse at 6 months; 35-50% by one year; and 65-75% by three to five years (Anthony et al., 1978). Estimates of the average number of re-admissions per patient are not available, but until 1972 when there was a slight reversal in the trend, a striking national increase in re-admissions relative to first admissions was evident. We can safely say that a majority of deinstitutionalized patients manage to reside in the community most of the time, experiencing one rehospitalization every three to five years. Relative to goals and intentions, the deinstitutionalization effort has been most successful in keeping patients out of hospitals.

We learn a great deal about the quality and content of patients' lives by examining their living situations in the community. Few live with biological or social relatives. The majority live alone, in residences that may be supervised (board and care, residential


treatment, and half-way houses) or unsupervised (single room occupancy hotels, rooming houses, apartments) (Talbott, 1980). Segal and Aviram's (1978) large scale study of board and care homes in California demonstrates that severely impaired persons can benefit from custodial community care, but that moderately to minimally disturbed residents may stagnate and deteriorate in these places, much as they might have in psychiatric hospitals. Lamb's (1979a) study of a similar population suggests that al- though many have no goals to alter their lives, feel often depressed, lonely, and symptomatic, such living facilities offer to most a sense of protection and care and may be the new asylums for patients who have no place else to go. Reynolds and Far- berow's (1977) intensive ethnographic research in board and care homes replicates the above findings, noting the lack of personal growth among residents.

Research investigating the social networks and natural support systems of schizophrenics in primarily urban Northeastern communities yields additional information. Relative to non-schizophrenics, the networks of identified schizophrenics tend to be smaller, transient, closed, asymmetrical and non-reciprocal, and affected by level of symptomatology (See Beels, 1981; Pattison & Pattison, 1981; Sokolovsky, Cohen, Berger & Geiger, 1978).

My analysis of the interpersonal worlds of clients intensely involved in a community treatment program complements the above, revealing that presumed normals (staff and most community members) have control of the time, space, information, and resources shared with clients (Estroff, 1981). If clients seek symmetrical (culturally valued) relations in which they experience themselves as equal and similar to others, paradoxically they must interact mainly with other clients and thereby participate in a sociocultural world similar to the hospital. The paradox deepens when we see that the treatment program and social services uti- lized by clients encourage them to live in similar spatial, temporal, and sociocultural arenas, apart and different from the community at large.

Research findings from both coasts and the midwest, in urban and suburban settings, with patients in and out of treatment programs, are markedly similar. We are then justified in ques- tioning if such living conditions and social relations differ significantly from those deemed noxious in psychiatric institutions. Isolation and segregation from the non-patient community, custodial care, stagnation, and dependency continue. These persons congregate by invitation and by choice, forming social systems

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that may perpetuate rather than ameliorate their negatively valued differences.

The vast majority of patients in groups one and two are not employed. Within the first year after discharge, and during par- ticipation in community treatment programs, 30-5076 may work. After one year, 75-80% are unemployed. Those who do work may be in sheltered jobs or in janitorial, food service or other menial settings (Estroff, 1981). The unemployed live most often by virtue of disability income from a variety of sources. Based on Kochhar's (1979) statistics for 1975, I estimate that in 1980, 372,000 psychiatric patients are receiving Supplemental Security Income at a cost of nearly $65 million annually. The fact that all these people cannot or will not work in the conventional labor force and need to be provided for leads one to question whether not working and living on income maintenance money awarded on the basis of psychiatric disability differs significantly, in terms of use of time and space and self-esteem, from being hospitalized and not working but receiving food, shelter, and clothing. Per- sons on SSI who do not work experience temporal, spatial, and social isolation from others because for them there is no work vs. leisure time, no office or work place to go to, and no social network of co-workers. Autonomy may not be enhanced when many patients have financial guardians, over 75% in my research sam- ple, and receive allowances after rent is paid and other necessities attended to.

Other qualitative indices are on the whole lacking in outcome research but indications are that patients' self-esteem, quality of life, and satisfaction with treatment are no worse in the community than in the hospital and in some cases are better (Stein & Test, 1980). A recent multi-center study of day treatment found that none of the programs significantly changed patient attitudes toward themselves or their families more than did maintenance drug treatment (Linn, Caffey, Klett, Hogarty & Lamb, 1979). Another research project yielded unexpected and significant levels of agitation and depression among outpatient subjects (Hogarty, Schooler, Ulrich, Mussare, Ferro & Herron, 1979).

This concentrated and brief review paints a familiar picture from a sociocultural perspective. Those patients most profoundly affected by deinstitutionalization have seen the least change. Most of them still live with other patients in places controlled by non- patients or they live alone, perhaps in contact with their families. On the whole they are still unemployed and receive subsistence supplies based on their disabilities. They experience relative pow-


erlessness vis a vis the non-patient community and live and interact separately. Some of the more fortunate are involved in treatment programs but most are not (Minkoff, 1978). They are still given medication by medical personnel who believe it essential (Davis, 1975, 1976), but many patients develop (permanent or temporary) visible side effects (Tepper & Haas, 1979), and do not take prescribed doses (Van Putten, 1974), contributing to pro- found ambivalence about medications and confusion about the illness status of their problems because the medicine seldom results in a cure (Estroff, 1981). Despite recent increases in services, there is near general agreement expressed by Talbott (1979) that the care and treatment of the severely and chronically mentally ill remains a 'national disgrace.' Lamb (1979b) is more explicit, observing: ". . . we substituted one kind of neglect for another by shifting these people to an unprepared and unreceptive community where many are living impoverished lives."

Why has deinstitutionalization failed the most needy patients? Without discounting the successes in keeping patients and

potential patients out of psychiatric hospitals, and with proper acknowledgement of those innovative programs that employ home care, crisis intervention, long-term supportive services, self- help and advocacy, work training and placement, live-in volun- teer helpers, and flexible residential treatment (Stein & Test, 1978), it is clear that in sociocultural terms, failures far exceed successes. Because others have reached similar conclusions (e.g. Kirk & Therrien, 1975), numerous explanatory hypotheses have been offered. I will present these and offer my own in concluding the paper, classifying the explanations as economic, clinical, and social. Problems in the administration and delivery of services are discussed by Test in this issue.

Economic Allocations of resources reflect social values and commit-

ments. Thus, problems of neglect of needs, maintenance rather than care or treatment, and a lack of acceptance of the capabilities as well as deficiencies of patients are reflected and expressed in economic factors. Lack of funding for services is perhaps the most frequently cited reason for failures in the deinstitutionalization and community treatment movement (Sharfstein & Clark, 1978). In addition, funding determinations, policies, and criteria are thought to be based on factors other than effective treatment, such as cost, that are detrimental to patients (Paul, 1978). For

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example, disincentives for work are inevitable under the current SSI system (Ozawa & Lindsey, 1977), but it costs less than hospital care. Third-party payers reimburse medical and often not psychosocial treatment, even though the latter has been most successful with chronic patients (Mosher & Keith, 1979). Recently, fiscal crises, high unemployment among the general population, and a lack of jobs for unskilled and anxious persons such as many of the psychiatrically troubled also contribute to patients' not working (Williams, Bellis & Wellington, 1980), and therefore re- maining enmeshed in the treatment system. While it is not clear that effective community treatment costs less than hospital care (Linn et al., 1979; Weisbrod, Test & Stein, 1980), it may be much less expensive over time and in terms of salvaged human dignity and potential productivity because some of the pitfalls of institutionalization may be eschewed.

Clinical The most prominent clinical theory about why chronic psy-

chiatric patients fail to 'get better' is that they suffer with neu- rochemical disease processes, controllable but not curable through pharmacologic intervention (Davis, 1975, 1976; Reifman & Wyatt, 1980; Snyder, Banerjee, Yamamura & Greenberg, 1974). Pre- vailing psychological theories about schizophrenic symptomatology and persistence of incapacity focus on the presence of thinking disorders and disturbance in interpersonal relations and self experience (Chapman & Chapman, 1973).

In concert with the predominant medical paradigm is the idea that community treated patients relapse and do not function well because many fail to take prescribed medications in appropriate amounts, if at all (Hogarty, Goldberg & Schooler, 1974). Recent research (Gardos & Cole, 1976; Schooler, Levine, Severe, Brauzer, DiMascio, Klerman, & Tuason, 1980), however, suggests that the need for drugs may have been over-estimated.

Other clinical reasons cited for failure are that large numbers of patients drop out of treatment and that inappropriate treatment models are in use. For example, Linn et al. (1979) report a multi-center study of day treatment in which successful programs involved occupational therapy, recreation activity and long-term supportive care. Poor-outcome centers emphasized individual and group psychotherapy, treated for shorter periods of time, and employed more professional mental health personnel. Contrary to the findings of this and other research (e.g. Paul & Lentz, 1977), most outpatient treatment consists primarily of


drug maintenance and fragmented support services delivered by mental health professionals.

The exhaustion or burn-out of staff who may project their own values and ambitions onto unwilling and unable patients, and who have not confronted their own responses to the often ex- treme dependency needs of their clients is thought to contribute to poor patient outcome (Lamb, 1979b; Mendel, 1979). Patients have also been seen as uninterested in recovery because of the benefits of their sick, crazy roles (Ludwig, 1971), or because they cannot sort out paradoxical and contradictory indications about what is wrong with them and how they can achieve non-patienthood (Erikson, 1957). Families are seen to play a role in the etiol- ogy and exacerbation of psychiatric disturbance by participating in intensely negative emotional environments which neither patients nor families can tolerate (Greenley, 1979; Vaughn & Leff, 1976).

Social Removing patients from psychiatric hospitals was in part

predicated on the belief that living in communities and experiencing as little role disruption as possible would be therapeutic. Recent research yields conflicting data about community response to these persons and pressing questions have been raised as to whether the community represents a benevolent or therapeutic place to live (Aviram & Segal, 1973; Lamb, 1979a; Segal, Bau- mohl & Moyles, 1980). Thus the failure of deinstitutionalization to bring about increased psychosocial functioning and reintegra- tion of patients into community life is seen as continued stigma and exclusion of the mentally ill, whether by formal or informal mechanisms invoked by community members.

A complementary hypothesis concerns social cost or community burden (Arnhoff, 1975). The idea is that releasing patients into the community and treating them there poses a burden on families, community services, and community members who now contend with the sometimes bizarre, suicidal, and disruptive behavior of patients. Violent crime has been shown to be a growing problem associated with former psychiatric patients but again the data are conflicting (Rabkin, 1979). It is not clear if more criminals are being hospitalized or whether the new commitment standards that require dangerous behavior create a tautology reflected in the statistics. In one of the few studies of social cost, Test and Stein (1980) found no difference in reported burden between families of community treated patients and those in the

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hospital. However, families claim that their lack of inclusion in planning and implementation of treatment and the blaming in- herent in current family and social theories of mental illness have posed major obstacles for success.

Labeling theorists (Schur, 1971) have argued that the social processes involved in becoming diagnosed and treated as mentally ill in our society provide few exits for patients, placing the burden of proof for normalcy on the labelled person. Researchers, on the whole, have neglected to examine the social processes among patients that both enhance coping skills and contribute to separation and negatively valued life styles in the community.

Startling confirmation that sociocultural factors affect the prognosis of psychotic persons comes from the International Pilot Study on Schizophrenia Follow-up Study (Sartorious, Jablensky & Shapiro, 1978; WHO, 1979). Of all the variables considered, living in a Western, industrialized country (U.S., Great Britain, Denmark) was the strongest predictor of poor outcome. Persons with equivalent symptoms who lived in non-Western, less industrialized countries (Nigeria, Colombia, & India) fared much better over the two years between baseline and follow-up. Waxler (1977) points to cultural factors such as ritual that work for inclusion and cure in traditional societies as opposed to forces that dictate exclusion in treatment in our own. However, what specific factors contribute to the WHO findings remains to be learned.

The deinstitutionalization and community treatment of the most severely and chronically impaired has failed because these movements were directed more at the fact of institutionalization than the sociocultural reasons for it. We failed to recognize ade- quately the powerful sociocultural reasons that hospitals were built and persons placed there. Removing patients did not alter the fear of symptoms, nor diminish stigma; it did not increase resources available for care nor motivate relatives to participate in treatment; and surely it did not magically result in patients having more control of their lives, more self-esteem, more dignity. Insufficient headway has been made in challenging the social institutions, roles, and processes that constitute and contribute to chronic psychiatric patienthood in our society, inside and outside the hospital.

Patients have needed and wanted hospitals. They have needed shelter, a place to receive treatment, and a place in which to be


crazy in private if need be. Some of them have been unable or unwilling to cope with their feelings toward themselves or others or with others' responses to them. Others have been excluded or incarcerated when they wish not to be. In either case, the exits have been poorly marked, for individuals almost always fail when they do battle with social processes and roles.

Patients' families have needed hospitals also. They have needed to believe that their loved one was safe and receiving treatment. Relatives have also needed a rest from the chaotic conditions created by living with psychotic persons. Because we failed to acknowledge the importance of families in hospitalizing their relatives (Greenley, 1979), insufficient attention has been paid to ameliorating conditions that might allow many of those patients now living alone to live with relatives like most others in our society. Families deserve and require not blame, but assistance in managing the stresses associated with living with and caring about these people (Williams & Shetler, Note 1).

Mental health personnel, working both on behalf of their own beliefs about appropriate care and in service to community demands for protection from and for psychotic, disturbed and disturbing persons have needed hospitals. Successful deinstitutionalization and community treatment must fulfill or compro- mise these often competing needs without extensive use of hospitals. These tasks are perhaps greater than any of us have imagined.

The persons most affected by deinstitutionalization have been the patients. The location of their treatment has changed, but the ways in which they are treated by staffs, their families, each other and the community have changed much less. The medical treatment system still prevails, and with it the giving of medicine, and asymmetries in power, access to information, and intimacy. Medical and staff persons continue to know more about patients than vice versa, and to play roles as gatekeepers to resources such as SSI, housing, and jobs. Yet one of the goals of deinstitutionalization has been to alter the powerful dependency of patients on staff and social institutions, and to foster self re- liance, responsibility, and self esteem among patients. Social research shows that none of these goals have been realized.

The outcome of deinstitutionalization thus far is not entirely discouraging, despite all the failures noted above. Trends toward long-term, nurturant care available when patients want and need it in Community Support Systems Programs (Turner, 1977) are heartening. We must take care, though, that patients are not

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forced to become 'communitized" as we invest in these services, for as Klerman (1977) warns, "The essential question here is not whether the patient in the community is 'better off' than the hospitalized patient, it is the moral issue of whether or not he is being given a choice in the matter" (p. 629).

Attention to the sociocultural consequences of experiencing psychosis in our society can be incorporated into community treatment. The problem can be conceptualized as one of culture and identity, interacting within the larger social system. As Von- negut (1976) reminds us, "Most diseases can be separated from one's self and seen as foreign intruding entities. Schizophrenia is very poorly behaved in this respect. Colds, ulcers, flu, and cancer are things we get. Schizophrenic is something we are. It affects the things we most identify with as making us what we are," ("Prologue," einphasis mine). Altering an identity which is so powerful and negatively experienced may be much more difficult than curing a disease. Social processes create the formula: disease = self, and social processes must be altered in changing the equation.

Patient-controlled treatment programs (Chamberlain, 1978) and the growing number of self-help, advocacy and consciousness raising groups among former and current patients offer alternatives to the present system that encourage patients to be in charge of their own lives and treatment. In addition to these ex- citing developments are attempts to use less medication and more personnel in treatment, job sharing among patients, patient run businesses, alternative living arrangements that involve patients and non-patients as equal members of households, and consciousness raising among staff so that they can facilitate the empow- erment of their clients.

The principles that guide our future policy and treatment formulations might be: 1) Care and treatment should be planned with and not just for patients. 2) Cultural differentness, not simply disease, characterizes these people. 3) All members of our sociocultural system participate in the perpetuation of psychiatric patienthood. 4) Various alternatives are better than one umbrella program or policy. 5) Realizing the goals of deinstitutionalization requires creating or recreating more benevolent social institutions than those of the past or present. Nearly all of our efforts have been focused on changing patients so that they can live amongst us, while little attention has been directed toward altering communities and their members' beliefs and behaviors so that we can live with them. If we can seek alternatives as stubbornly as we have clung to the constructions of the past, successes should out- strip failures decisively in the decades to come.


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Documents

Psychiatric Deinstitutionalization: A Sociocultural Analysis