Deinstitutionalization at the Crossroads - Psychiatric Services

Deinstitutionalization at the Crossroads H. Richard Lamb, M.D. Much has gone u@ong with dein stitutionalization. To get back on course, the author says, we should acknowledge that while deinsti tutionalization was a positive step, it has gone too far—that some of the long-term mentally ill now in the community need highly structured residential care. The long-term mentally ill should be made the highest priority in public mental health, and a com prebensive system of care that rec ognizes their heterogeneity needs to be established. Vigorous reha bilitation efforts aimed at help ing them attain higher levels of

f unctioningshouldbecontinued, but mental health professionals should also give high priority to those who function less well and recognize the grat:fication that can be derivedfrom working with them. The more favorable long term outcome of schizophrenia should not be confused with the lesser improvements that can be made over the short or interme diate term. Professionals need to come to grips with the bureau cracy, politics, and inefficiency of our largest cities and should also actively advocate for involuntary treatment when it is clinically in dicated.

and incredible phenomenon of the homeless mentally ill. The condi tions under which they live are symptomatic of the lack of a cam prehensive system of care for the

long-term mentally ill in general. Though the homeless mentally ill have become an everyday part of today's society, they are nameless;

the great majority are not on the caseload of any mental health pro fessional or mental health agency. Hardly anyone is out looking for them, for they are not officially missing. By and large the system does not know who they are or

where they came from. We can see first hand society's reluctance to do anything defini tive for them; for instance, stop gap measures such as shelters may problem of a lack of a comprehen sive system of care is not addressed

( 1). We can see our own ambiva

Dr. Lamb is professor in the department of psychiatry at the University of Southern Califor nia School of Medicine, 1934 Hospital Place, Los Angeles, Cali fornia 90033.

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tutionalization

and

than the shameful

Community

Psychiatry

Hospital

and

community

Has deinstitutionalization gone too far in attempting to treat long ill persons in the community? We now have more than three decades of experience to guide us. Some long-term men tally ill persons require a highly structured, locked, 24-hour set ting for adequate intermediate or long-term management (2). For those who need such care, do we not have a professional obligation to provide it (3), either in a hospi tal or in an alternative setting such as California's locked skilled nurs ing facilities with special programs for psychiatric patients (4)?

be provided,but the underlying term mentally

lence about taking the difficult stands that need to be taken—as, for instance, advocating changes in the laws for involuntary treat ment and the ways these laws are administered. When we get to know homeless mentally ill persons as individuals, we often find that they are not able to meet the criteria for the programs that most appeal to us as professionals. For the citizenry generally, the homeless mentally ill represent everything that has gone wrong with deinstitutionali zation, and their circumstances have persuaded many that deinsti tutionalization was a mistake. Many things have gone right with deinstitutionalization. For in stance, the chronically mentally ill have much more liberty, in the majority of cases appropriately so,

Probably nothing more graphically illustrates the problems of deinsti

than when they were institutional ized; we have learned what is nec essary to meet their needs in the community; and we have begun to understand the plight of fami lies and how to enlist their help in the treatment process. But the purpose of this paper is twofold: to examine the problems of deinsti tutionalization—not just with re gard to the homeless mentally ill but for the long-term mentally ill generally—and to draw upon our experience, especially our clinical experience, in working with them in order to make recommenda tions about what we should do.

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Where to treat should not be an ideological issue; it is a deci sion best based on the clinical needs of each person. Unfortu nately deinstitutionalization efforts

have, in practice, too often con fused locus of care and quality of

care (5). Where mentally ill per Sons are treated has been seen as more important than how they are treated. Care in the community

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has often been assumed almost by definition to be better than hospital care. In actuality, poor care can be found in both hospital and community settings. But the other issue that requires attention is appropriateness. The long-term mentally ill are not a homogene ous population; what is appropri ate for some is not appropriate for others.

For instance, what of those per sons who are characterized by such problems as assaultive behavior;

severe, overt major psychopathol ogy; lack of internal controls; re luctance to take psychotropic medi cations; inability to adjust to open settings; problems with drugs and alcohol; and self-destructive be havior? When attempts have been made to treat some of these per sons in open community settings, they have required an inordinate amount of time and effort from mental health professionals, van ous social agencies, and the cnimi nal justice system. Many have been lost to the mental health system and are on the streets on in jail.

Moreover, both mentally ill pen sons and mental health profession als have often considered these results as evidence of failures by both groups. As a consequence, many long-term mentally ill per sons have become alienated from a system that has not met their

needs, and some mental health professionals have become disen chanted with their treatment. Un fortunately the heat of the debate over whether to provide interme diate and long-term hospitalization for such patients has tended to obscure the benefits of commu nity treatment for the great ma jority of the long-term mentally ill who do not require such highly structured 24-hour care.

priority population in public men talhealth. If so, does this priority include commitments of our resources and our funding, as well as our con cern? We have learned a great deal about the needs of the long term mentally ill in the commu nity. Thus we know that this popu lation needs a comprehensive and integrated system of care (6); such a system would include an ade quate number and range of super vised, supportive housing settings; adequate, comprehensive, and ac cessible crisis intervention, both in the community and in hospitals; and ongoing treatment and reha bilitative services, all provided as sertively through outreach when necessary. We know the importance of a system

of

case

management

in

which every long-term mentally ill person is on the caseload of a mental health agency that will take full responsibility for individual ized treatment planning, linking patients to needed resources and monitoring them so that they not only receive the services they need but are not lost to the system. Have we done enough to put our knowledge into practice? For most parts of this nation, the answer is clearly no (7). Therapeutic but realistic optimism Nothing is more important than therapeutic optimism if we are to work successfully with the long term mentally ill. But equally im portant is a need for a realistic appraisal of these persons' capaci ties. With such an appraisal we can mount vigorous treatment and rehabilitation efforts for those with

distinct bias in favor of the values held by these professionals and by middle-class society generally (8). Thus holding a job, increasing one's socialization and relationships with other people, and living in dependentlymay be goalsthatare not shared by a large proportion of the long-term mentally ill. Likewise, what makes the pa tient happy may be unrelated to these goals. Patients may want (or need) to avoid the stress of com petitive employment, or even shel tuned employment, and of living independently. They may expeni ence more anxiety than gratifica iion from the threat of intimacy that accompanies increased involve ment with other people. Further more, many relatives may be pni manly interested in the simple pro vision of decent custodial care (9). Moreover, if we use expecta tions applicable to the higher functioning patients as our only model, we will neglect the large population who are lower func tioning and cannot respond to these expectations. And, in fact, in many jurisdictions this popula tion has been neglected. We can only speculate about why. One possible reason is the fail ure by some mental health profes sionals to recognize that there are many different kinds of long-term patients who vary greatly in their capacity for rehabilitation and for change (1 0). Long-term mentally ill persons differ in their ability to cope with stress without de compensating and developing psy chotic symptoms. They differ too in the kinds of stress and pressure they can handle; for instance, some

who are amenable to social reha

ourselves if we have truly estab lished this group as the highest

functioningand strivefor other goals, such as improving quality of life,when patientshave less potential. An important issue related to goal setting is that the kinds of criteria that theorists, researchers, policymakers,and clinicians use to assesssocialintegration have a

bilitation cannot handle the stresses of vocational rehabilitation, and vice versa. What may appear, at first glance,to be a homogeneous group turns out to be a group that ranges from persons who can tolerate almost no stressat allto those who can, with some assis tance, cope with most of life's demands. Such a view is supported by the

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Some basic questions What about the majority

of long

term mentally ill persons who are able

to live in the

community?

First and foremost, we need to ask

the potential

for high levels of

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very

marked

variations

of course

and outcome in both the shorter term follow-up studies of schizo phrenia (1 1,12) and the longer term studies discussed later. For some long-term patients, competi tive employment, independent liv ing, and a high level of social functioning are realistic goals; for others, just maintaining their pre sent level of functioning should be considered a success (13). Dependency, and the reactions of professionals to it, may well be another important factor. To gratify dependency needs and to nurture are crucial activities in the helping professions. And we learn to do this in such a way that pa tients do not experience a loss of seW-esteem from knowing that they need our help and support (14). Not only may this process be drain ing to professionals, but in addi tion when we nurture, we expect growth, and we are sorely disap pointed when we do not get it, even though the potential for the growth we seek may not be there. As a result, lower-functioning pa tients may receive less of our at tention, our resources, and our efforts.

term mentally ill than those of professionals having to come to terms with the fact that some per sons are unable, or unwilling, or both to give up a life of depend ency. The matter of independence pre sents similar problems. Society gen

Most of us morally disapprove of persons who have “¿given in― to dependency needs, adopt a passive life-style, and accept public support instead of working.

erally, including professionals, highly values independence. And yet nothing is more difficult for many long-term mentally ill per sons to attainand sustain(15). The issue of supervised versus un supervised housing provides an ex ample. Professionals want to see their patients living in their own apartments, managing on their own, perhaps with some outpa Moreover, most of us, as prod tient support. But the experience ucts of our culture and our soci of deinstitutionalization has been ety, tend to morally disapprove that most long-term mentally ill of persons who have “¿given in― persons living in unsupervised set to their dependency needs, who tings in the community find the have adopted a passive, inactive ordinary stresses of managing on life-style, and who have accepted their own more than they can han public support instead of working dle. After a while they tend to (10). Perhaps this moral disap not take their medications, to ne proval helps to explain why pro glect their nutrition, and to let grams whose goals are rehabili their lives unravel and become dis tating patients to high levels of organized. Eventually they find functioning, or “¿mainstreaming― their way back to the hospital or them, attract the most attention the streets (1). and the most funding. Such pro Mentally ill persons highly value grams are very much needed. If, independence, but they very often however, professionals attempt to underestimate their dependency raise patients' low-functioning ad needs. Professionals need to be aptations to the pressures of life, realistic about their patients' po without making a realistic appraisal tential for independence, even if of the capabilities of each individ the patients are not. ual, an acute exacerbation of psy Still another factor that may con chosis may result. Probably no prob tribute to the focus on higher lems are more difficult to over come in the treatment of the long functioning patients is some pro

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fessionals' lack of appreciation of the rewards of treating patients who function less well and of form ing a relationship over many years with both patient and family. Even when the potential for higher func tioning is limited, we can derive an immense amount of satisfaction from helping to transform chaotic, dysphoric life-styles into stable ones, with at least some opportu nity for pleasure and contentment for both the mentally ill person and thefamily. Long-term

outcome

and expectations Some mental health professionals believe that long-term follow-up studies of schizophrenia indicate that we should raise our expecta tions of how schizophrenics will function in the community. Such a conclusion requires closer scru tiny. These studies, with mean lengths of follow-up ranging from 22.4 to 36.9 years, have demon strated considerable degrees of im provement and even “¿recovery― over time (16—20). These findings are not surpris ing, for they are consistent with everyday clinical experience that schizophrenia in the patient's mid die and later years tends to be more benign and far less stormy than in the earlier years. In con trast, younger schizophrenics are faced with the same concerns and life-cycle stresses as others in their age group. They strive for inde pendence, satisfying relationships, a sense of identity, and vocational success.Many, lackingthe ability to withstand stress and intimacy, struggle and often repeatedly fail. The result is anxiety, depression, psychotic episodes, and hospitali zation. Denial of illness and the rebelliousness of youth often com pound the problems. As the years go by, schizophren icsand those around them tend to come to terms with the illness. Goals are lowered, and expecta tions are lessened. Under these circumstances many persons with

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limited abilities to cope and deal with stress gradually become able to function in both vocational and domestic roles, meeting lowered expectations of others and them selves. With time the fires of youth burn lower. Increasing maturity is still another factor. Thus older patients with schizophrenia may present a far different picture than when they were younger, less ma ture, and striving to meet higher aspirations.

Involuntary treatment Involuntary treatment presents us with an extremely difficult di lemma. Our beliefs in civil liber ties come into conflict with our concern for the welfare of our patients. This dilemma can be re solved if we believe that the men tally ill have a right to involuntary

treatment

(24,25) when, because

What are the practical limits of what our nation, and in particular our largest cities, can and will do to serve the long-term mentally ill? The greatest number of these persons are in our largest cities, but it is here that the politics are most complex, the bureaucracies largest and most cumbersome, the battles for power and turf fiercest (22,23). Here too the administra tive costs of providing care tend to be high, often more than 50 percent of the budget, leaving an insufficient amount for actual ser vices to patients. It is in the larg est cities, too, that resistance to change tends to be strongest and most stubborn. These factors, if not corrected, inevitably lead to inadequate care of the long-term mentally ill.

of severe mental illness, they pre sent a serious threat to their own welfare or that of others and at the same time are not mentally competent to make a rational de cision about accepting treatment. Reaching out to patients and working to encourage them to ac cept help on a voluntary basis is certainly an important first step. But if it fails and the patient is at serious risk, helping professionals need to see that ethically we can not simply stop there. Is it not our obligation to advocate for changes in the laws that will facili tate involuntary treatment for such persons, or changes in the way the laws for involuntary treatment are administered? These changes would result in patients' prompt return to acute inpatient treatment when it is clinically indicated, and ongoing measures, such as conser vatorship, court-mandated outpa tient treatment, and appointment of a payee for the patient's Sup plemental Security Income check, when they are indicated. What is needed is a treatment philosophy recognizing that such external controls are a positive, even crucial, therapeutic approach for those in the long-term men tally ill population who lack the internal controls to deal with their impulses and to organize them selves to cope with life's demands. Such external controls may inter rupt the self-destructive, chaotic life of a patient who is on the streets and in and out of jails and hospitals. For instance, in some parts of California, conservatorship has be come an important therapeutic mo dality for such persons. It is par ticularly useful when conservators

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There is a danger, however, in using the word recovery rather than remission when referring to improved or even normal func tioning. Recovery implies eradica tion of the illness. The evidence is compelling that schizophrenia, with its predisposition to decom pensation under stress, is a geneti cally determined illness (2 1). There is no evidence that patients' ge netic predisposition to decompen sate under stress disappears. More over, as important as these long term findings are, they should not mislead clinicians working with schizophrenics in their twenties or thirties to expect short- or inter mediate-term results that are be yond individual patients' capabili ties within shorter time frames.

Problems of the cities

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are psychiatric social workers or persons with similar backgrounds and skills who use their court granted authority to become a cru cial source of stability and support for chronically mentally ill persons. Conservatorship thus can enable persons who might otherwise be long-term residents of hospitals to live in the community and achieve a considerable measure of auton omy and satisfaction in their lives. If we do not take a firm stand on these issues, we risk being seen by society, not to mention by the long-term mentally ill themselves, as uncaring and even inhumane. The homeless mentally ill dramati cally illustrate this issue.

The tasks ahead of us What do we need to do to get deinstitutionalization back on course? The following strategies should be considered.

. We should acknowledge that while deinstitutionalization was a positive step and the correct thing to do, it has gone too far. S Of

the

long-term

mentally

ill

now in the community, only some need intermediate or long-term highly structured 24-hour residen tial care. For those who need such care, however, we should provide it. When

we do not, the resulting

problems and debate obscure the benefits of community treatment for the great majority who do not require highly structured 24-hour care.

. We should truly make the long-term mentally ill our highest priority in public mental health in terms of both resources and funding. In making this commit ment, we should join with our natural allies, the families.

. We should establish a corn prehensive and coordinated sys tern of care for the long-term men tally ill.

. We should not settle for stop gap solutions, as, for instance, re lying on a system of shelters for the homeless mentally ill instead of dealing with the underlying prob lem of the lack of a comprehen

Hospital and Community

Psychiatry

sive system of care for the long term mentally ill generally. •¿ We should have the needed therapeutic optimism to treat the long-term mentally ill, but temper this optimism with realistic, mdi vidualized goals. •¿ We should emphasize that the long-term mentally ill are a highly heterogeneous population. •¿ We should be aware that the values and goals of psychiatrically disabled persons may be different from those projected onto them by well-meaning professionals. •¿ We should continue to mount a vigorous rehabilitation effort aimed at achieving higher levels of functioning, both social and vo cational, for those long-term men tally ill persons who can benefit from it. •¿ We should also give high pri ority to those among the long-term mentally ill who function at lower levels and not focus only on persons with higher functioning. •¿ We should realize the gratifi cation we can derive from helping to change the chaotic and painful life of a patient who is on the streets and in and out of jails and hospitals into a stable life that offers the possibility of at least some contentment, even ifwe can not rehabilitate that patient to a high level of functioning. •¿ We should not confuse the more favorable long-term outcome of schizophrenia over 20 or more years with the lesser improvements that can be accomplished over the short or intermediate term. •¿ We should come to grips with the bureaucracy, politics, and inef ficiency of our largest cities, where so many long-term mentally ill per sons live. It may be that these problems cannot be solved and that in some instances the respon sibility for the long-term mentally ill should be taken away from the cities and another administrative solution found—as, for instance, turning this responsibility over to the states. •¿ We as mental health profes sionals should actively advocate in

voluntary treatment, both emer gency and ongoing, for persons for whom it is clinically indicated. We have now had more than three decades of experience with deinstitutionalization. Most of what we know about community treat ment of the long-term mentally ill we have learned the hard way through experience. We need to be guided by that hard-won knowl edge, look at each long-term men mtally ill person as an individual with unique strengths, weaknesses, and needs, and do what our expe rience and clinical judgment tell us needs to be done to maximize the benefits of deinstitutionaliza tion for each individual.

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HR

come in schizophrenia: a report from the International Pilot Study of Schizophrenia. Archives of General Psy chiatry 32:343—347, 1975 13. Solomon

EB, Baird B, Everstine

L, et

al: Assessing the community care of chronic psychotic patients. Hospital and

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1980 14. Lamb HR: Some reflections on treat ing schizophrenics. Archives of Gen

eral Psychiatry 43:1007—101 1,1986 15. Harris M, Bergman HC: Differential treatment planning for young adult chronic patients. Hospital and Commu nity Psychiatry 38:638—643, 1987

16. Bleu.ler M: A 23-year longitudinal study of 208 schizophrenics and impressions in regard to the nature of schizophre nia, in The Transmission of Schizophre

niL Edited by Rosenthal D, Kety 55.

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New York, Wiley, 1979 12. Hawk AB, Carpenter WT, Strauss JS: Diagnostic criteria and five-year out

Oxford, (ed): The

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tally Ill: A Task Force Report of the American Psychiatric Association. Wash

ington, DC, American Psychiatric As sociation, 1984 2. Dorwart RA: A ten—yearfollow-up study of the effects of deinstitutionali zation. Hospital and Community Psy chiatry 39:287—291, 1988 3. Group for the Advancement of Psy chiatry: The Positive

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Term Hospitalization in the Public Sec tor for Chronic Psychiatric Patients. New York, Mental Health Materials Center, 1982 4. Lamb HR: Structure:

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phrenics. Schizophrenia Bulletin 6:606— 618,1980 19. Tsuang M, Woolson R, FlemingJ:

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term outcome of major psychoses, I: schizophrenia and affective disorders compared with psychiatrically symptom free surgical conditions. Archives of Gen eral Psychiatry 36:1295—1301, 1979

20. Harding CM, Brooks GW, Ashikaga the neglected

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gredient of community treatment. Ar chives of General Psychiatry 37:1224— 1228,1980

5. Bachrach U.: A conceptual approach to deinstitutionalization. Hospital and Community Psychiatry 29:573—578, 1978

6. Bachracha: The challengeof service planning for chronic mental patients. Community Mental 22:170—174, 1986

England, Pergamon,

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7. Talbott JA: The fate of the public psy chiatric system. Hospital and Commu nity Psychiatry 36:46—50, 1985 8. Shadish WR Jr, Bootzin RR: Nursing homes and chronic mental patients.

Schizophrenia Bulletin7:488—498, 1981 9. Thomas 5: A survey of the relative im

portance ofcommunity carefacility char acterisncs to different consumer groups. Presented at the Midwestern Psycho logical Association, St Louis, 1980 10. Lamb HR Treating the Long-Term Men tally Ill. San Francisco, Jossey-Bass,

1982 11. World Health Organization: Schizophre nia: An International Follow-Up Study.

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T, et al: The Vermont

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study of persons with severe mental illness, II: long-term outcome of sub jects who retrospectively met DSM III criteria for schizophrenia. Amen

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22. Keill SL: Politics and public psychiat nc programs. Hospital and Community Psychiatry 36:1143, 1985 23. Elpers JR: Dividing the mental health dollar: the ethics of managing scarce resources. Hospital and Community Psy chiatry 37:671—672, 1986 24. Rachlin 5: One right too many. Bulle tin of the American Academy of Psy chiatry and the Law 3:99—102, 1975 25. Lamb HR. Mills MJ: Needed changes in law and procedure for the chroni cally mentally ill. Hospital and Com munity Psychiatry 37:475—480, 1986

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