An uncertain path: psychiatry in the U.S. over the last 200 years.
AN INTRODUCTION TO MADNESS IN THE 21ST CENTURY
For as long as humans have existed, madness has existed. How we have named and responded to madness changes constantly.
To be of sound mind is to have the ability to reason. The loss of reason - the loss of
the ability to think, understand, and engage with one's environment using judgment and logic - represents a departure from the social whole.
When an individual loses this link to their sense of social belonging, isolation often follows along with a decline in health. Humans are social creatures and we tend to thrive when we feel a sense of greater purpose, connection, and belonging. When someone behaves in ways that challenge their integration with the social order, disorder can set in.
The response to the mad among us has ranged from inclusion to exclusion, horror to awe, and embracing to rejecting over the centuries. Madness has been called insanity, unreason, and today is divided into nearly 300 diagnostic categories that specify its myriad nuances.
What can our collective past tell us about the future of mental illness? Going back a mere 200 years from today, let’s shed light on the question, “How did we end up where we are now?”
A NOTE TO THE READER
I spent an hour on the phone last week with a father who was desperate to help his 32-year old son who has been experiencing psychosis for over 12 months. Out of the blue, it seemed to this father, his son changed and became distant. That distance developed into isolation and then paranoia. Paranoia led to bizarre and frightening behaviors.
He was hospitalized 5 times in those 12 months, each time in handcuffs, and against his will. His father fears that the trauma he experienced each of these times has deepened the psychosis.
His son is over 18, so this father is not permitted access to clinical information from any of those 5 hospitalizations unless his son signs a release of information. Convincing someone who is paranoid to sign a release can be challenging and often does not engender a sense of trust or autonomy for that person. Systems in place to protect privacy often hinder recovery in situations like this.
This father desperately wants his eloquent, sensitive, and kind son back; he does not recognize the erratic, paranoid person in front of him. He feels powerless to help ease his son's suffering, knowing at the same time that if he calls for "help" it includes police officers and firefighters showing up, pounding on his son's door, and threatening to break the door down if he doesn't come out.
No matter how many times I hear this story, it never ceases to take my breath away. Most people do not know how deeply flawed our mental health system is until they have to experience it first-hand. There is the madness of the individual and then, on the other hand, there is the madness of the system.
As Oliver Sacks wrote in 2009, "...[the] mentally ill remain the least supported, the most disenfranchised, and the most excluded people in our society today."
Where is the kindness, compassion, and truly integrative care for these individuals? How did our mental health "system" get this way?
For the past 6 months, I have been researching that question. This blog post is my attempt at putting the pieces together.
MADNESS DURING THE AGE OF REASON: THE GREAT CONFINEMENT
Let’s travel back to the late 1700s, give or take 25 years, in Western civilization.
This is the end of the Early Modern Period (a time period that includes the Middle Ages, the Renaissance, and the Age of Discovery and Exploration) and the beginning of the Late Modern Period (a time that includes the Age of Reason, interchangeably referred to as The Enlightenment).
The Age of Reason followed after all the mysticism and religion of the Middle Ages. It represented a shift in the way humans living in Western cultures viewed self, society, government, science, and the pursuit of knowledge. During the Middle Ages, mental illness was often seen as a person being possessed by demons; it was during the Enlightenment that people began to wonder if there was a scientific reason behind madness. During the Enlightenment, reason and logic were valued over faith and superstition.
It was also around this time that the human population on Earth surpassed one billion people for the first time and densely populated cities were a new norm. Madness, or mental illness as we call it today, shows up in Western society in a variety of ways around the late 1700s to early 1800s.
During this time, people experiencing madness understood it (like today) on a spectrum of severity from mild to extreme. To find those with the more extreme experiences of madness, you would look in four main places:
The private homes of families wealthy enough to care for someone in this state,
The churches charged with the care of these individuals,
The homeless poor living marginal lives on the streets, and
The locked rooms in hospitals where these individuals were confined.
MORAL TREATMENT: A MORE ETHICAL APPROACH
At the end of the 1700’s, a physician in France named Philippe Pinel and a Quaker asylum director in England named William Tuke became active around providing more humane care for those experiencing madness. Their ideas were a radical departure from the brutality, chains, and confinement of the 1600s and early to mid-1700s.
Pinel coined the term for this approach as moral treatment. In French, moral can also mean ethical. It was a paternalistic
model that it saw the mad very much like children and the asylum director as a parent figure. Pinel believed that insane people did not need to be chained or beaten, but instead treated with kindness, offered freedoms, and allowed access to recreation, conversation, and light manual labor. It was a vastly more ethical and humane approach to the care and treatment of madness than what was being practiced.
Moral treatment emphasized the importance of the environment as being the main therapeutic tool to help people participate in everyday life. Moral treatment included a rigid daily schedule, patients and staff dining together, work details assigned based on gender, and access to creative outlets such as arts and crafts. Moral treatment also valued the therapeutic use of labor and many asylums included woodshops, gardens, farms, and orchards for this very purpose.
THE SUCCESS OF THE ASYLUM WAS ITS DOWNFALL
The asylum as a specialized institution for the containment of the insane took its place in Western society during the 1800s and was largely a domain of the church, not a specialized medical field.
French philosopher, Michel Foucault, coined this time in history “The Great Confinement” because the response to the mad during the Age of Reason was to separate them from the rest of society.
Moral treatment was a product of the Enlightenment and its first proponent in the U.S. was Benjamin Rush, a physician and humanitarian. He believed that the insane should be treated in a bucolic asylum setting away from the busy pace of everyday life. Rush also employed medical practices such as blood-letting and he invented the “tranquilizer chair” as a restraint.
After Rush’s death, Dorothea Dix in 1841 pushed for asylums to be spacious, light, and have beautiful grounds. Because of her activism and efforts, there was much optimism around curing madness in the 1840s and 1850s. Dix personally helped to establish 32 mental hospitals in the U.S. People believed that a lack of restraints and providing a highly structured schedule in a peaceful setting would help facilitate a cure.
During the second half of the 1800s, pressures were placed on asylums to admit more and more patients and huge populations began to strain the system. It was initially only the mentally ill who were confined in asylums; at this time prostitutes, blasphemers, vagrants, and others deemed undesirable were also locked away against their will.
The original vision of moral treatment was of small facilities of no more than 30 patients. This vision degenerated into large facilities where little attention was given to the individual and the mere upkeep of the buildings and grounds was unsustainable.
The asylum model based on moral treatment fractured as populations grew to several thousand patients per asylum. Once large numbers of people were confined in asylums, the medical field took its first interest in “curing” madness. The asylum at this moment became the focus for decades of medical experiments meted out on largely unwilling and uninformed individuals.
THE EMERGENCE OF PSYCHIATRY AS A FIELD OF MEDICAL STUDY
Step forward to the mid-1800s and the work of German scientist, Wilhelm Griesinger. With Griesinger's work, the ties between the asylum and the university clinic were first made. Before Griesinger, the study of psychiatry was peripheral in the academic medical world. Basically, Griesinger launched the field of psychiatry as a credible area worthy of academic study.
Madness was newly seen as a disorder of the brain and nerves and basic research of brain anatomy moved to the fore. Researchers like Alois Alzheimer discovered abnormalities in the brain, such as plaques and tangles. The basic scientific work of Griesinger and Alzheimer made zero contribution to actual clinical care for people. On the contrary, this new model of German psychiatry was very pessimistic and saw madness as a chronic state of mental decline.
Another German researcher, Emil Kraepelin, dedicated his study to the observation people living in asylums. The outcome of his work was a classification system for madness that detailed two main categories:
Dementia praecox (later labeled schizophrenia) and
A residual category of manic-depressive psychosis.
Kraepelin’s work was the first time that madness was seen not as a unitary entity, but divided into different specific disease categories.
Kraepelin was a proponent of eugenics. Eugenics is, “...the science of improving a human population by controlled breeding to increase the occurrence of desirable heritable characteristics...as a method of improving the human race” (Google dictionary). Eugenics was a practice not solely confined to the Nazi's of Germany. It was a popular concept in America as well; at one point its popularity led to the forced sterilization over 60,000 American citizens.
Kraepelin’s research did not mark any break from the pessimism of the burgeoning field of psychiatry and his as well as others’ research placed the cause of madness squarely in the biological brain.
FREUD: MAKING MEANING OF MADNESS
With the clinical work of Sigmund Freud, between 1895 and 1905, the concept of madness having meaning returned to being an accepted concept. Freud was a psychoanalyst and popularized the idea that mental illness could be rooted out by talking.
Freud's work contrasted with the brain-based theories of the time and ended up having a massive impact on Western culture. Freud’s ideas resonated beyond psychology and into literature, advertising, cinema, and child-rearing. Especially after his death, his general ideas extended to all types of mental illness, mild to severe.
In America, specifically in the first 4 decades of the 1900’s, there was scorn held for Freud’s views among those in the psychiatric field and there was not total widespread adoption of his theories. The anatomists and the psychoanalysts vied for dominance.
In the US at that time, there was a drive towards the physical explanations for madness, divorced from the meaning-making and symbolism of psychoanalysis. A tension between these two perspectives was maintained for decades.
MADNESS ORIGINATING FROM PHYSICAL ABNORMALITIES
It was in the first half of the 1900s in America that “...therapeutic experimentation on the vulnerable bodies of those certified mad” (Andrew Scull) were methodically carried out.
The asylum was still the central housing apparatus for the most severely ill and their inmates had few rights and no ability to refuse treatment or experimentation. It was during this time that drugs, electricity, malarial mosquitoes to induce fever, partial drowning, spinning chairs, organ removal, insulin coma, 5-point restraints, sensory deprivation, and noxious gas were all used.
The idea continually being tested was that madness could be shocked or cut out of the body somehow.
In the 1930s a Portuguese scientist, Antonio Moniz, began to operate on (really, just damage) the brains of the mad.
He developed the invasive prefrontal lobotomy, a procedure that involves boring a hole in the skull and using the equivalent of a butter knife to mess with the prefrontal cortex of the brain.
Two George Washington University medical school doctors, Walter Freeman and James Watts, studied with Moniz and brought the prefrontal lobotomy to the US. The procedure was so quickly popularized because once done, it extinguished psychosis. Their method involved boring into the brain through the eye socket with an ice-pick-like device and using a mallet to damage the brain.
The procedure was done on patients as young as 4 years old and was carried out regularly at American asylums. For all the patients who fell victim to this horrific procedure, capacity for empathy, forethought, and impulse-control vanished and individual personality was often forever altered.
The idea that mental illness took root within the physical body was further explored when soldiers, returning from World War II, were unable to cope with the stressors of reintegrating to civilian life. This was called shell-shock (later called PTSD). The idea that explosions had caused shell shock by rattling the brain added support to the concept that madness had a biological root cause.
SEARCHING FOR A MAGICAL CHEMICAL BULLET
In 1928, penicillin was discovered. Although it took a decade to be fully implemented in treating infections, the excitement of the discovery bled into other areas of science.
In the late 1940s a tiny French drug company called Rhone-Poulenc was experimenting with a drug called chlorpromazine. When given to people with psychosis, its effect was referred to as a “chemical lobotomy”.
The drug rights for chlorpromazine were sold to an American company called Smith, Kline, and French, who renamed the drug Thorazine. It eventually became the first antipsychotic, but before that, the American drug company tested it for a range of uses, none having to do with mental illness. Their final experiment was for the application of Thorazine with mental patients in asylums. It was the final area of experimentation because up until this point, developing drugs to treat mental illness was not a profitable pursuit.
It was the year 1953 and Thorazine had been tested on a grand total of 104 psychiatric patients, without their consent. Thirteen months later, thanks to the subduing effects of the drug, it was being prescribed to over 2 million people. The pharmaceutical industry exploded in growth from this point forward.
ABANDONING THE ASYLUM
In 1955, the number of patients in state hospitals and asylums in the U.S. peaked at 559,000.
The arrival of Thorazine coincided with great public post-war criticism of the abysmal state of asylums and allowed public policy, in a matter of years, to discharge thousands of patients. Over the years that followed, most asylums closed permanently as funding dried up and interest turned to community-based care. Thorazine was no Penicillin, but it ushered in a new era of psychiatry that included a rapid rate of development of drugs for every type of mental ailment.
Before the 1950’s the majority of psychiatrists worked in mental hospitals. After this time, droves of psychiatrists left the asylums to work in outpatient settings and private practice, where they could work with relatively stable people. In 1952, the first Diagnostic and Statistical Manual (DSM) was published, detailing a total of 106 unique mental illness diagnoses.
A new thought emerged that combined the practice of psychoanalysis with the use of antipsychotics: if you can control the symptoms of mental illness, a person may be more able and willing to address the underlying causes of their illness.
At the academic level, department chair positions formerly widely held by psychoanalysts were rapidly replaced with psychiatrists working as neuroscientists and psychopharmacologists. This shift was funded almost entirely by the pharmaceutical industry paying academic institutions to conduct drug trials. The field of psychiatry was elevated in status as a result in the academic and medical communities.
The shift in psychiatry towards a systematized approach to madness mostly alienated psychoanalysts. When, in 1980, the DSM-III was published, it made almost no mention of Freudian or psychoanalytic terms. The surface symptoms of mental illness became the focus. Detecting scientific markers and symptoms of disease became the goal of the profession.
As Scull wrote, “The more precise the diagnostic criteria, the more easily pharmaceutical companies could create and market drugs for specific psychiatric use”.
DSM-I in 1952: 106 diagnostic categories
DSM-II in 1968: 182 categories
DSM-III in 1980: 265 categories
DSM-IV in 1994: 297 categories
More recently, the psychiatric profession received heavy criticism about the constantly growing number of diagnostic categories. The most recent revision of the DSM, published in 2013, still includes just 297 diagnostic categories.
WHAT HAPPENED TO ALL THOSE ASYLUM PATIENTS?
When hundreds of thousands of psychiatrist patients were discharged from the crumbling asylums in the mid-1900s, one of three things happened to them:
The new medications allowed some to manage their symptoms independently and live stable lives.
Another group found the combination of outpatient care and medications to be adequate enough to help them live relatively stable lives. Many of these individuals returned to living with family members.
The third group, those with more severe or chronic issues, who had no family were suddenly homeless (about 250,000) and left to suffer the trials of the street: illicit drugs, starvation, incarceration, violence, and premature death.
At the same time that asylums fell out of favor in the US, the same was happening in other countries including England, France, and Spain. The public began to see madness as a product of imbalanced brain chemistry, neurotransmitters misfiring, and bad genes.
The 1990s was declared the Decade of the Brain by the National Institute of Mental Health (NIMH). The fall of psychoanalysis as the dominant philosophy in psychiatry made way in the latter half of the 20th century for a mix of biological, social, and psychological approaches to treatment. This more eclectic approach was echoed in most other Western countries.
PRISONS: THE NEW CONFINEMENT
The confinement of the mad that was so popular from the early 1800s to the mid-1900s gave way to community care being the more desirable approach. For some, this worked.
For those enduring the most severe and persistent mental illness, the negative toll was extreme. The US government, after closing the brick-and-mortar asylums, failed to provide the promised funding to establish community care centers in each State.
To this day, no State in the US provides the minimum number of recommended inpatient beds to meet the needs of its most sick and vulnerable citizens. And no State was successful in establishing adequate community mental health centers to meet the demand for outpatient therapy.
In a report written by the Treatment Advocacy Center in 2018, it was observed that,
"The United States is effectively running 50 different experiments, with no two states taking the same approach. As a result, whether or not an individual receives timely, appropriate treatment for an acute psychiatric crisis or chronic psychiatric disease is almost entirely dependent on what state he or she is in when the crisis arises."
A new kind of confinement has occurred: prisons, which house about 600,000 mentally ill inmates. For example, today in California, prisons are the largest “providers” of mental health care. Thankfully, many states have diversion programs established to interrupt the now well-worn path of psychiatric patients from the Emergency Room to a jail cell.
THE PHARMACEUTICAL BONANZA
After the popularity of Thorazine, the first antipsychotic, many other antipsychotics were developed. The pharmaceutical industry then popularized tranquilizers, the next big wave of drugs for curing mental ills. By the mid-1970’s Valium, part of a new class of drugs called benzodiazepines was the most prescribed (and abused) drug in many countries.
A very popular diagnosis at that time was anxiety, which included a broader definition of experiences and behaviors than ever before. Anxiety slowly gave way to depression as the most popular diagnosis, and antidepressants such as Prozac rose in popularity and use. Both anxiety and depression encompassed definitions of mental stress and strain, tension, and discomfort that gave rise to a more generalized experience of mental illness, with much of the general public now meeting criteria for a mental illness that did not exist a few years earlier.
At the writing of this essay, the drug class of opioids is in the spotlight much like Valium and other benzodiazepines were in the spotlight in the ’70s. While benzodiazepines are sedatives and tranquilizers, opioids are used for the relief of pain. More than a third of drug overdoses today involve a combination of benzodiazepines and opioids.
It is important to note that the pharmaceutical industry is the single most profitable industry in the world. In 2008, antipsychotics alone accounted for $14.6 billion dollars in annual profit.
WHO SHOULDERS THE BURDEN OF CARE?
Today, in 2019, our understanding of the brain is still in its infancy. We continue to know very little about the causes of psychosis, schizophrenia, or bipolar disorder.
While an optimized medication regimen (as little as possible to achieve the desired effect) may be beneficial, a little-discussed epidemic is the iatrogenic effects
of the dozens of psychotropic medications that have been developed (and too often over-prescribed) over the last 70 years. These drugs are well known to cause heart disease, metabolic dysfunction, brain damage, weight gain, and diabetes, to name just a few.
A startling measure of the price that people with serious mental illness have paid is the fact that their life expectancy has been reduced by, on average, 25 years when compared to the general population. This is the most jagged pill to swallow.
This essay is written for the families who, for years, have been caring for a loved one with serious mental illness. I also write in honor of all the individuals whose rights to a fulfilling life were stolen away by extreme interventions forced on them against their will. The emotional and financial toll that mental illness takes on families is extreme. When asylums disappeared, a societal load-bearing structure vanished with nothing to take its place; the burden of care was tossed like a hot potato from the federal to the state to the local level and finally, the family.
When we look back 200 years, to the time right before asylums gained wide popularity, we look into the homes of families. And we see a very similar scene played out then as we do today.
I am left with more questions: What progress can we say has actually been made? And is the pursuit of a cure for madness even the correct path to take?
TO LIVE A SATISFYING AND PRODUCTIVE LIFE
When you look at the evolution of psychiatry from a 40,000-foot vantage, it is easy to miss all the good that has happened. On a small scale, pockets of hope exist where the individual experiencing madness is given respect, shown kindness, and cared for in truly integrative ways. Where are those places, who are those caregivers, and how can we draw public attention to their efforts? They are not flashy, quick-fixes or miracle cures. We've learned our lesson with those kinds of things, right?
The original impulse behind the asylum was to create a place of secure refuge. In fact, that is the root definition of the word asylum and the driving force behind the moral treatment movement. Much like an immigrant fleeing their country and seeking asylum, the person experiencing psychosis is unmoored from their life and in need of a secure refuge, a place of rest and sanctuary.
The late and brilliant Oliver Sacks, MD wrote for the New York Review in 2009 about some pockets of hope in the mental health field. You can hear an echo of the moral treatment philosophy in Sacks’ observations.
“What is the situation now? The state hospitals that still exist are almost empty and contain only a tiny fraction of the numbers they once had. The remaining inmates consist for the most part of chronically ill patients who do not respond to medication, or incorrigibly violent patients who cannot be safely allowed outside. The vast majority of mentally ill people, therefore, live outside mental hospitals. Some live alone or with their families and visit outpatient clinics, and some stay in “halfway houses,” residencies that provide a room, one or more meals, and the medications that have been prescribed.
Such residences vary greatly in quality—but even in the best of them (as brought out by Tim Parks in his review of Jay Neugeboren’s book about his schizophrenic brother, Imagining Robert , and by Neugeboren himself, in his recent review of The Center Cannot Hold, Elyn Saks’s autobiographical account of her own schizophrenia), patients may feel isolated and, worst of all, scarcely able to get the psychiatric advice and counseling they may need.
The last fifteen years or so have seen a new generation of antipsychotic drugs, with better therapeutic effects and fewer side effects, but the too exclusive an emphasis on “chemical” models of schizophrenia, and on purely pharmacological approaches to treatment, may leave the central human and social experience of being mentally ill untouched.
Particularly important in New York City—especially since deinstitutionalization—is Fountain House, which was established sixty years ago, and provides a clubhouse on West 47th Street for mentally ill people from all over the city.
Here they can come and go freely, meet others, eat communally, and, most importantly, be helped to secure jobs and fill out tax forms and tricky paperwork of one sort or another.
Similar clubhouses have now been established in many cities. There are dedicated staff members and volunteers at these clubhouses, but they are crucially dependent on private funds, and these have been less forthcoming during the current recession.
There are also, intriguingly, certain residential communities that derive, historically, both from the asylums and the therapeutic farm communities of the nineteenth century, and these provide, for the fortunate few who can go to them, comprehensive programs for the mentally ilI. I have visited some of these—Gould Farm in Massachusetts, CooperRiis in North Carolina—and seen in them much of what was admirable in the life of the old state hospitals: community, companionship, opportunities for work and creativity, and respect for the individuality of everyone there, now coupled with the best of and whatever medication is needed.
Often it is rather modest medication in these ideal circumstances. Many of the patients in such places (though they may remain schizophrenic or bipolar for the rest of their lives, in the sense that a diabetic remains a diabetic) may graduate after several months or perhaps a year or two, and be able to lead full and satisfying lives with no relapses, no recidivism, no looking back.
But there are only a handful of comparable facilities in the US—they can accommodate no more than a few hundred patients out of the millions that exist. These patients must depend on their families to help pay the very considerable costs of staying there—more than $100,000 a year—and on whatever can be raised from private sources.
The remainder—the 99 percent of the mentally ill who have insufficient resources of their own—must face inadequate treatment and lives that cannot reach their potential. The National Alliance for the Mentally Ill does what it can, but the millions of mentally ill remain the least supported, the most disenfranchised, and the most excluded people in our society today.
And yet it is clear—from the experiences of places like CooperRiis and Gould Farm, and of individuals like Elyn Saks—that schizophrenia is not necessarily a relentlessly deteriorating illness (although it can be); and that, in ideal circumstances, and when resources are available, even the most deeply ill people—who have been relegated to a “hopeless” prognosis—may be enabled to live satisfying and productive lives.”
POCKETS OF HOPE
Sacks mentions three programs specifically: