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34. History of Schizophrenia Care
Keywords
History of psychiatryAsylum psychiatryCommunity psychiatryAntipsychiatryCorrectional psychiatryPenrose hypothesisBureaucracyWeberNazi GermanyEugenicsAktion T4ProfessionalismHumanismEssential Concepts
You cannot understand the state of current healthcare without looking through the lens of history.
Our discipline has its roots in asylum care which always had a custodial aspect to it even if this may not have been the intended purpose.
Goal displacement (a feature of dysfunction in Weber’s systems of bureaucracy) has led to the misuse and demise of institutional care when state hospitals became places of social control and warehousing instead of psychiatric treatment. As a consequence, high-quality and longer inpatient care, if needed, can no longer be provided by the public sector in many states since most state hospitals have closed.
Community psychiatry as the predominant treatment paradigm today is the result of attempts to reform institutional psychiatry beginning with deinstitutionalization in the 1950s. Since community-based services were never adequately funded, community psychiatry struggles to provide services for increasingly complex outpatients with multimorbidities.
Many patients who used to live in state hospitals were merely “de-hospitalized” (discharged) and “transinstitutionalized” (moved into the criminal justice system); they never reaped the benefit from deinstitutionalization as intended. They literally and figuratively lost their asylum – the place they cannot be expelled from.
The antipsychiatry movement was also a group of reform-minded psychiatrists in the 1960s who tried to improve the care of institutionalized patients who had no voice.
The behaviors of psychiatrists that led the killing of psychiatric patients in Nazi Germany (Aktion T4) are important reminders that medical practice can be terribly subverted unless the interest of patients and their welfare are of paramount value.
Any healthcare design needs to pay attention to these areas: patient-centered care, transitional age youth, med-psych integration, community psychiatry (including full continuum of care), multimorbidity (including substance use), workforce development, and technology.
Professional commitment to humanism and commitment to individual patient welfare must be the basis for all decisions regarding the organization of healthcare.
“Today, any form of the concrete world, of human life, any transformation of the technical and environment is a possibility […]. This would mean the end of utopia, that is, the refutation of those ideas and theories that use the concept of utopia to denounce certain socio-historical possibilities.” [1]
– Herbert Marcuse, 1898–1979; German-American philosopher of the Frankfurt School
From a lecture delivered in 1967 at the Freie Universität in West Berlin.
Societies since antiquity have grapples with the management and treatment (those are not identical concepts) of those who used to be identified as “mad” or “deranged.” Many patients with serious mental illness in the United States today receive psychiatric treatment not in state-run institutions like the asylums of old anymore but in the community. However, we also have large numbers of patients who are managed in another state-run institution instead, prisons or left to their own devices with no care, homeless in the streets of our inner cities.
I conclude this book with a brief chapter on the history of schizophrenia care and our current mental healthcare system since the availability, accessibility, and affordability of services have an impact on any clinical decision you make. This chapter is not a comprehensive or coherent history of psychiatry; refer to the standard text by Shorter listed under Additional Resources [2]. Instead, I selected key institutions and movements that define our current practices. I am going to emphasize our profession’s origins in asylums and the influential community psychiatry movement (that has not yet ended). I also include a section on the antipsychiatry movement and on psychiatry during the German 3rd Reich as both have relevance for ethical practice. How we manage schizophrenia today (i.e., which systems of care are available to us) is the result of historical developments and decisions that people before us made, based on their values and economic realities [3]. If our current system is understood in this way, we need to honestly acknowledge that any system could change – if we want change. This chapter skips healthcare financing and the business of medicine, which are both clearly important technical areas but ultimately more a reflection of what a society prioritizes. There is nothing inevitable about our current healthcare system, and accusations of “utopianism” are often a mere smoke screen for lack of interest in change (see epigraph).
Asylum Psychiatry
Schizophrenia is a young disease, first described in its current, recognizable form by Emil Kraepelin a little more than 100 years ago [4]. Named dementia praecox by Kraepelin in 1893 (in the 4th edition of his textbook [5]), Eugen Bleuler gave schizophrenia its current name [6]. The basic concept of schizophrenia as a non-episodic psychiatric illness characterized by the predominance of typical symptoms of psychosis has not changed much since these early pioneers described this disease entity. What has changed is the way we manage schizophrenia. In Kraepelin’s days, psychiatrists (or rather “alienists,” as they were called because they tried to help patients overcome their mental “alienation” [7]) practiced in state hospitals. Most patients with schizophrenia, once admitted to a state hospital, would live out their natural lives in these “total institutions” (a term the sociologist Erving Goffman [8] used to describe settings where people are taken care of in their totality, e.g., prisons or the military, in a weaker form a residency would count). The rules that govern behaviors in total institutions are examples of structural violence (see Chap. 32). With deinstitutionalization (see below), state hospitals have fallen out of favor, and many states by now have closed most of their state hospitals.
Asylum psychiatry was not a fundamentally bad idea – it is an example of good intentions gone bad [2]. The first asylums with recognizable state hospital architecture in the United States were set up in the nineteenth century with enlightenment principles in mind: to provide humane care for vulnerable people who had no place in society; rather than chaining them, a healthy environment, away from the stressors of modern life (“moral treatment”), was thought to be conducive to healing and eventual reintegration in society [9]. By World War I, asylums had been turned into the hellholes that many younger psychiatrists associate with them. Why asylum psychiatry failed is a lesson in bureaucratic dysfunction, specifically goal displacement according to Weber’s model of bureaucracy: a system set up for a particular purpose gets usurped for different goals [10]. When we began to send people with problems other than mental illness (poverty, sociopathy, alcoholism) to asylums, the link between confinement and treatment was broken, leading to warehousing and overcrowding [11]. To this day, psychiatry has not recovered from this nihilistic and purely custodial image, perpetuated by highly influential movies like “One flew over the cuckoo’s nest,” released in 1975. This has had tragic consequences for the small but real group of seriously ill patients who require what corresponds to intensive care, even for prolonged periods of time. While nobody wants to bring back the dysfunctional asylums, modern state hospitals are a needed piece in a full continuum of care [12]. Unfortunately, closing yet another state hospital (i.e.., reducing psychiatric inpatient beds) appears to be a source of pride for politicians, with a domino effect of many unintended consequences.
Perhaps the most dramatic consequence of the reduction in psychiatric beds has been a move of patients into the correctional setting. Increasingly, the correctional system is being tasked with providing mental health services, down to the job of being “road runners” by shuttling psychiatric patients to psychiatric facilities [13]. (No patient with a heart attack or stroke is transported by the police to a treatment facility.) This task shifting is the result of seriously limited community treatment options and dire shortage of psychiatric beds. As a result, patients with psychiatric conditions only receive treatment once the correctional system has intervened. We seemed to have reached a sad point in our history where another Dorothea Dix needs to emerge to extricate our patients from the correctional system [14].
I also like to point out the diametrically opposed associations that people have when they conjure up images of an “asylum” or the “community.” It should not be forgotten that state hospitals were once seen as “asylums,” as places from which vulnerable people could not be expelled, as one meaning of asylum. The view of asylums changed when what was once a good idea was turned upside down by overcrowding, as noted earlier. Conversely, while “community” conjures up images of peace and happiness, patients can be institutionalized in the community in the middle of downtown Boston, not partaking in civic life but wasting away in poorly run group homes, with little to no interaction with the community at large. A small subgroup of very vulnerable patients no longer has the option of living in an asylum. Not surprisingly, patients create their own places that function as asylums. Is it surprising that the same group of patients frequents emergency rooms, a place from where they cannot be expelled immediately, but have to be listened to and given at least temporary respite?
Key Point
State hospitals (asylums) are no longer fashionable, but they play a key role in a functioning public sector healthcare system that provides high-quality psychiatric care. For a small minority of patients, a longer-term hospitalization would allow for meaningful diagnosis and long-term care planning that is currently all but impossible, including elective admissions for necessary stepped care (e.g., a clozapine trial for a complex patient). Many seemingly available inpatient beds are not available as they are reserved for forensic patients. As an unintended consequence of state hospital closures, patients have lost their asylum – a place from which they cannot be ejected.
Community Psychiatry Movement
Today, most patients are cared for in the community. This is the result of medical progress (chlorpromazine became widely available for clinical use in 1954), societal changes (human rights), and legislation (President John F. Kennedy signed the Community Mental Health Centers Act in 1963); together, it allowed for an emptying of state hospitals, known as deinstitutionalization. From a high of 558,000 public psychiatric beds in 1955 (340 bed per 100,000), we had 35,000 beds in 2018 (11 beds per 100,000); this number is woefully inadequate to provide a full continuum of care [15]. Even worse, it could be argued that we did not have successfully deinstitutionalize our state hospital population in the United States but merely succeeded in “dehospitalization,” with most people who used to be institutionalized in state institutions now at best be “institutionalized in the community,” or worse “transinstitutionalized” into jails and prisons, or homeless [16].
Penrose Hypothesis
Penrose hypothesis
For many, the promises and hopes of deinstitutionalization never materialized. As anyone treating the typical ambulatory patient with schizophrenia in a community mental health center will discover quickly, high-quality services beyond acute care beds are simply not widely available, and patients often receive little more than medications. An increasingly deskilled workforce is often not qualified to provide behavioral interventions for patients who are among the most difficult patients in psychiatry. Those rehabilitation services that exist are often underfunded and poorly staffed. Too often, you succeed for brief periods not because of the support of a comprehensive treatment system but because of your persistence and individual, random act of kindness, for example, an insurance person extending a direly needed hospital stay for another 3 days. Sadly, dedication alone and working harder, without financial support and a larger system of care to back you up, seems to be the current American solution for the long-standing mental health crisis. The well-documented burnout in medicine and psychiatry [18] is surely in part due to the organizational chaos in the trenches of today’s psychiatric care.
There are great differences in the financing and hence provision of mental healthcare between the states. States that have opted out of the Medicaid expansion (a provision in the Affordable Care Act that increased the number of low-income patients who could receive healthcare through Medicaid), for example, provide less money for their public sector and safety net services. Other states lean philosophically toward a more communitarian responsibility for caring for patients with a serious mental illness who need our support. I suspect disparities in availability of services and access to healthcare between the states due to different levels of funding (moral commitment) will still be an issue in the next edition of this book.
Antipsychiatry Movement
We may be the only specialty that faces sustained critique from a movement, the so-called antipsychiatry movement – there is no anti-cardiology movement. If you go to a major psychiatry meeting, there is usually a protest against psychiatry, often staged by the Citizens Commission on Human Rights (a branch of scientology).
Lasting contributions from “antipsychiatry”
Proponent | Main point |
|---|---|
Franco Basaglia | Patients are citizens who also have rights |
Erving Goffman | Total institutions (e.g., state hospitals) also have a control function |
Thomas Szasz | Psychiatric diagnosis is also socially constructed |
Michel Foucault | Societies control behaviors, including patients, in subtle yet effective ways |
RD Laing | There are also pathologies of society, and psychosis is also understandable |
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