Andrew Scull
Desperate Remedies: Psychiatry's Turbulent Quest to Cure Mental Illness
Harvard University Press
512 pages, 6 1/8 x 9 1/4 inches
ISBN 9780674265103
In Desperate Remedies, I look at American psychiatry, with a few glances at European developments. I examine how the profession of psychiatry came into being in the early nineteenth century, and then trace its evolution, and the ways in which its responses to mental illness have shifted, all the way to the present or as close to the present as publication allows. It’s a complicated story of how mental illness came to be defined as largely a medical issue. I discuss the evolution of our responses to mental illness over the roughly two centuries, beginning with the rise of the asylum era and closing with the era of deinstitutionalization. The rise of a very narrowly framed notion that mental illnesses are brain disease leads me to discuss some of the problems that I think stem from looking at a very complicated problem through that rather narrow lens.
While the term evolution implies some straightforward pathway, I think it’s much more convoluted than that. There is a series of what at the time were seen as revolutions but in retrospect seem to be revolutions that either failed or did not fully live up to their promise. It’s certainly a story of considerable misgivings about how we’ve managed to tackle this problem. The book is an attempt to both examine the ways in which things have improved to some degree, and to point out the limitations of what we’ve been able to accomplish. In some ways our understanding of mental disturbances remains rather primitive: we don’t really have cures at our disposal but at best we have Band-aids that symptomatically help some people, and unfortunately, don’t help others.
In retrospect, much of the history of psychiatry is rather dismaying. It may be harder to see the problems in the contemporary era than it is to look back and say, how on earth did we slice people’s frontal lobes, and think that was going to cure mental illness; or cause them to have seizures, and think that would do it; or start eliminating bodily organs as a way of treating what was seen as brain disease. How on earth did those interventions arise? What was the context? What was the impact on patients and their families?
The book strives to foreground the experience of patients by talking about the differential way in which treatments have affected groups, whether one looks at race and its analogues or gender, because it turns out that a remarkable part of the story, and a recurring one, is that men and women tend to be treated somewhat disparately. There’s overlap, but there are also notable differences, particularly in the degree to which these various treatments come to be applied to men and women.
Through the whole two hundred years there are periods of great optimism and periods of immense pessimism about what’s going on. It’s not a linear story of progress by any means. It’s important to see the complexity of this story, and to understand that change doesn’t occur in isolation. What we see happening in the realm of psychiatry, as it comes to be called, is connected with much broader changes in the larger society. Those connections I try to draw out in the book as carefully as I can.
In the early nineteenth century, America, like much of Europe in the same period, embraces the idea that the proper response to serious forms of mental disorder is to put people in institutions, and that occurs in the midst of an extraordinary optimism about what can happen. It’s important to understand, particularly given the awful reputation that asylums later developed, that at the outset asylums were seen as a way of rescuing people from prisons and jails, and from attics and pigsties, and putting them in a therapeutic institution. This was a shift marked by and triggered by a mood of extraordinary optimism, often called the cult of curability, between the 1830s and 1850s. The expectation was that these new institutions, run along what was called moral treatment lines, would succeed in curing 60 to 80 percent, and maybe even more of the patients, if only people were institutionalized early enough.
In the United States, a remarkable moral entrepreneur named Dorothea Dix traveled the country as a single woman, often on horseback, riding even across the Mississippi floods – it is quite an amazing story – browbeating politicians who ordinarily didn’t listen to women in the nineteenth century, and persuading them that if they built institutions they would not only provide a much more humane alternative to what had gone before, but they would actually cure patients in very large numbers. That was the premise on which states were induced to build these new institutions.
Then reality struck. I think the small early, charismatically run institutions genuinely did have a powerful impact in their early years, but it proved very difficult to make that routine. What happened once we built state institutions was that the promised cure rate was simply not achievable. Over time that meant a larger and larger fraction of the total patients in confinement were, in fact, chronic patients. If you didn’t exit within the first year or 18 months, chances were, you would only exit in a pine box, and there were often cemeteries attached to these institutions. So asylums grew in size remorselessly.
The earliest institutions were 80 or 100 patients. By the end of the nineteenth century asylums of a 1000, 2000, even 5000, 10000, or more, were becoming common. From a period where mental illness was seen as a curable condition, it had come to seem something that by and large was incurable. To an extent that was an exaggeration. Even in the closing decades of the nineteenth century some of the patients who entered the asylum did recover their wits. Whether that was because of what the asylum did to them, or just because of the passage of time, or some combination of those is neither here nor there. The point is that the fraction of patients being cured had fallen steadily, particularly when it was compared with the overall number of patients under treatment.
What occurred then was a crisis for a new profession that had emerged as these new institutions arrived on the scene. It’s something of a chicken and egg phenomenon. The alienists, or asylum superintendents, as they were called earlier in the nineteenth century, were the creation of the new institutions, but they were also the people who legitimized and explained what was going on in them. The profession as a whole had to face this immense problem that it had promised these huge numbers of cures, but in fact, wasn’t able to deliver them. This is one of the things the book talks about. How did the profession manage that crisis of legitimacy as the pessimism developed and became almost a self-fulfilling prophecy? We often think about a placebo effect which is quite powerful in medicine as well as in psychiatry. But this was kind of an anti-placebo or nocebo effect that became ever stronger as pessimism set in. One direct effect was to find budgets being cut, with conditions deteriorating as the sense that this was an incurable condition spread.
In the face of this crisis, the profession developed a very powerful explanation of why insanity couldn’t be cured. They insisted that mental illness was rooted in the body. In mental patients, these were bodies where evolution had gone wrong, it had gone in reverse. By this time, the last decades of the nineteenth century, Darwinian ideas about evolution rule the roost, and there’s much talk of how evolution leads to progress. But it was also possible for evolutionary change to go in the opposite direction. And so, the mental patients were increasingly spoken of in extremely negative terms, as tainted creatures, as people who had degenerated, who were almost subhuman and had lost their human quality. That provided a new justification for asylum, no longer as curative institutions, but as places to keep defective people out of the way, so they couldn’t breed and add to their numbers.
Pretty soon in the early twentieth century that led to proposals in the different states in America to perhaps solve that problem in a novel fashion. Rather than locking people up in perpetuity, one might proceed instead by sterilizing them involuntarily, and so marriage laws were passed, and actual sterilization of mental patients began to take place. Finally, in 1927 a test case, Buck versus Bell from Virginia, reached the United States Supreme Court, and Justice Oliver Wendell Holmes, one of America’s most famous jurists, who led an 8-to-1 Supreme Court, announced its decision: Three generations of idiots, he pronounced, are enough; the state has a compelling interest here, and it could override the wishes of patients and sterilize them. My state of California was among the leaders of this movement, and, in fact conducted more sterilizations than any other American state. But in America, there were lots of checks and balances in the political system. There was a lot of resistance, particularly from the Catholic Church to this program and so it never achieved the kind of universality that you might have expected, given the highly negative language that was being tossed about.
The situation was different across the Atlantic in Nazi Germany. The Nazis borrowed the California sterilization law and made it compulsory. Then, towards the end of the 1930s, they decided that mental patients were, after all, “useless eaters,” they weren’t going to get better, they were a drain on the public purse, so they set about systematically murdering them. They murdered as many as a quarter million patients with the active and enthusiastic participation of most German psychiatrists. That’s one way in which the downfall of the asylum system led to some pretty negative results.
One has to remember, of course, people join the medical profession and the psychiatric profession for a variety of motives, but very many of them genuinely want to be part of a healing profession. For psychiatrists it was very awkward to be bound up with a system that basically said their job was simply segregating people, locking them up in a boarding house, and sterilizing them. Still seeing mental illness through a biological lens, some of them started to look for alternatives, treatments that perhaps could address problems within the body, and thereby affect the mind. In that way, perhaps they could bring the patients back to sanity.
The other thing to bear in mind is that asylums shut people up in a double sense. They locked them away, and they also silenced them. The patient’s voices were not heard outside, and indeed, even within the institutions, their views were dismissed as the product of their madness. Having been committed to an asylum, they had lost all moral and legal rights and they were extraordinarily vulnerable. Everybody in this story – hence my title Desperate Remedies – is desperate. The profession is desperate to come up with cures. Families are desperate to rescue their loved ones. Patients in some instances who feel themselves losing their minds are desperate for some intervention. That is a recipe for therapeutic experimentation in an era where there’s no sense of patient rights or of testing therapies in any systematic way.
What we see, therefore, beginning in the 1910s and extending into the 1950s, is an orgy of experimentation. I would even argue that the advent of modern drug treatment is another example of this kind of thing. We see experiments on patients’ bodies which in many cases in retrospect seem to be quite horrific. Part of what I try to do in the book is explore how these treatments came about, what their logic was, why people thought they might affect the situation for the better, why they persisted, and then ultimately why they faded away. These chapters consist of some of the more dramatic parts of the book.
There are a range of these desperate remedies that I discuss in the book, and I’ll cite a few of them. One of the things that happened in medicine as a whole in the late nineteenth century is that the bacteriological model of disease, what we often call germ theory, had come to the fore. It had profound applications in surgery, for example. Once we understood sepsis, we could try to avoid it, and new operations became possible. It had powerful effects in general medicine, even before the antibiotic era, not least because we could develop effective vaccines against killer diseases. Diphtheria, for example, was a very common cause of childhood deaths in particularly horrible circumstances. So the development of a vaccine that essentially warded that disease off was quite remarkable. Medicine thus joins with science and laboratory in a new way. This model of disease seems to sweep almost everything before it. Only later on did we discover the limits of germ theory. Its arrival, though, transformed the image and the prospects of general medicine. But there was no equivalent breakthrough in psychiatry. Psychiatry is still stuck in these huge institutions that don’t seem to be curing most people.
In an intellectual leap that is perhaps not surprising, however, some people begin to suggest that maybe this same model of infection can be extended to include mental illness. Germs may be causing madness. What we’re seeing, they argue, is chronic infections lurking in the body untreated, releasing toxins into the lymph system and the bloodstream and poisoning the brain. This is called focal sepsis theory, and the idea is that all forms of mental disturbance are in fact, a product of this basic biological process. Since you don’t have penicillin or antibiotics, how are you going to tackle what you assume is the underlying problem here? And the answer becomes, you embark on a program called surgical bacteriology, or in lay people’s terms, you have to cut out the bits that are causing the problem.
Initially, the feeling is that, well, the teeth are closely adjacent to the brain. Many people have decaying teeth and that was still more common in the early twentieth century. So, let’s remove teeth and see if that makes people better, and if it doesn’t, well, maybe we should try removing tonsils. If they still don’t get better, at that point one might abandon the theory, or one might conclude that there are other infections lurking elsewhere in the body. It was that latter pathway that the enthusiasts for this treatment took. You must have swallowed the germs. So now we start removing stomachs and spleens and colons and uteruses.
Disproportionately these treatments are visited on female patients for reasons that remain obscure but that I think are rooted in medical perceptions of female bodies that we can trace all the way back to the ancient Greeks. So that’s one program that takes place. It’s announced by its major protagonist that it will cure 70 or 80 percent of patients. But in fact, it simply maims them, and in many cases kills them. Yet, the extreme surgery on the internal organs persists into the early 1930s. The removal of teeth and tonsils persists, for example, at Trenton State Hospital, which was the center of this sort of thing, all the way to 1960 before the focal sepsis theory was finally abandoned.
One major discovery at this time reinforces this notion that mental illness might be the product of bacteriological infections. One of the big groups of patients who end up in asylums in the late nineteenth and early twentieth century (and this was particularly true of male patients) were people suffering from something that had been discovered and identified all the way back in the 1820s. There was a group of patients in whom the early signs were quite subtle and easily overlooked. But these were people who began to articulate words with difficulty, they began to walk in a rather peculiar fashion. Their pupils often reacted unequally to light when you shone a light at them. Alongside these neurological symptoms, they also exhibited bizarre psychiatric symptoms like believing they were Jesus Christ or Napoleon, or George Washington, or Mary, the Mother of God. Over time, their neurological symptoms worsened, and they eventually became paralyzed. They usually died from bed sores and from choking on their own vomit – a terrible end that became known as general paralysis of the insane or GPI for short.
GPI accounted for 20 to 25 percent of male admissions to asylums in the early twentieth century. For a long time GPI was seen as perhaps the end state of all mental illness. Maybe everybody, if they lived so long, would develop this condition. Increasingly, though, GPI was seen as a separate condition, and in the early twentieth century, as part of the bacteriological revolution, we discovered what caused it. It was, in fact, tertiary syphilis. Syphilis, when you’re infected with it, produces primary symptoms which are impossible to ignore. But then it goes underground, and it may lay there lurking in your system for decades. Then sometimes it attacks heart valves, and you die. When sudden heart attacks kill middle-aged men, the connection to prior infections with syphilis is missed. In other cases, syphilis preferentially attacks the central nervous system, the spinal cord, and the brain. In 1912 the syphilitic organism was discovered in the brains of people with GPI. So here we had a form of madness that really was caused by a bacterium, and it was a uniformly fatal and awful disease.
Then, at the end of World War I, an Austrian psychiatrist, Julius Wagner von Jauregg, who had long thought that somehow fever and mental illness couldn’t coexist, came across an Italian prisoner of war suffering from malaria. He decided he would infect patients with GPI with malaria. Accordingly, he drew blood from this prisoner of war, and injected it into patients. He claimed he had achieved miraculous results, and that treatment spread like wildfire. Some mental hospitals had colonies of malarial mosquitoes, others sent malarial blood around and used it to infect patient after patient. That treatment won the Nobel Prize in medicine in 1927 and is one of only two psychiatric interventions to win a Nobel prize. Did it work? Hmm. There’s a great debate about that, and it was never subjected to a controlled trial. We know that the inventor of the treatment, as I show in the book, cooked the books. He announced results that were greatly at variance with what he actually achieved.
Still for about two decades, this was the treatment, until penicillin came along. That was a real magic bullet. These were not the only two biological treatments developed in this era. There were experiments, for example, with deep sleep therapy using barbiturates. There are experiments with putting people into a coma with one of the other great discoveries of modern medicine in the early 1920s, the discovery of insulin and its role in diabetes. Insulin transformed diabetes from a death sentence to a chronic illness. But if you inject too much insulin, people become unconscious, they go into a coma; if it’s deep enough they die. A man named Sakel thought that perhaps if you put people with schizophrenia into these comas, they would end up being cured. Insulin coma treatment was a very dangerous procedure. It involved huge amounts of medical man-and-woman power, including a lot of nurses, because people were literally hovering on the brink of death. Sakel claimed that this treatment selectively killed brain cells, that it killed the brain cells that were causing the schizophrenia. There was no basis for that claim, and finally, many years after the fact, in the late 1950s, when controlled trials were done, we learned that, far from curing 80 percent of schizophrenics, this was an essentially useless treatment.
There were also experiments with a number of shock treatments, using chemicals, and then electricity. ECT, of all these treatments, is the only one that survives into the present, albeit controversially, and we still don’t know why it works, if indeed it does. There’s some evidence, I think, that it does in some instances, at least temporarily, but it often damages patients’ memories.
Then there is probably the most extraordinary of these desperate remedies. In 1935, a Portuguese neurologist, Egas Moniz, begins operating on patients’ brains. (Actually, since Moniz was crippled by arthritis, a neurosurgeon operated for him.) The idea here was that if mental illness resides in the brain, perhaps attacking the brain directly will cure the problem. So lobotomy arrives on the scene. This new treatment originally was confined to Portugal. But it’s picked up by an American neurologist named Walter Freeman, who has a neurosurgical colleague named Jim Watts, and in Washington, DC, they start the first American lobotomies. Over time, through their efforts, lobotomy becomes a major form of treatment with tens of thousands of patients subjected to it. It’s important to know this is the second psychiatric treatment that wins the Nobel Prize in Medicine, in 1949, some 14 years after the first operation. One might think that by then people would have realized that it was a disaster, but not at all. And that’s a complicated and devastating story that I tell at some length.
That account includes one particularly difficult passage to both write and read, that reproduces the transcript of a lobotomy under way on a particular patient. We observe the patient asking the doctors to stop, and the operation proceeding nonetheless. A number of famous people were subjected to this operation, probably, most famous of all, being Rosemary Kennedy, JFK’s youngest sister, who was rendered essentially a basket case as a result of her operation, and lingered hidden away by the family for many decades. It’s an enormously sad story, though not an atypical one. So I discuss lots of these kinds of interventions. They need to be understood in context. We need to understand why it was that people embraced them, and how it was they came to die away. Lobotomy, for example, persisted well into the 1950s.
These earlier interventions were increasingly replaced by a new treatment that emerged accidentally in the early 1950s. The new treatment was dubbed by many a revolution, and in some ways it was. It forms the foundation of psychiatric practice vis-a-vis serious mental illness all the way down to the present. Of course, the advent of drug treatment, of psychopharmacology, is one of the important stories that I tell and try to analyze. The last third of the book is devoted in many ways to the impact of that revolution. I examine its successes and its limitations, and the ways in which in the present we’re facing something of a crisis as the drugs revolution stalls.
On some accounts, the story all seems pretty linear. Mental illness, its protagonists argue, is simply a biological condition, and this tends to be the current collective wisdom. But, actually in America during this period we also need to examine something else that happens along the way. Perhaps the best way of encapsulating this other phenomenon is to quote Leon Eisenberg. The famous Harvard Professor Eisenberg said that he’d lived through a period that saw us move from being captured by a brainless psychiatry to a later embrace of a mindless psychiatry – by which he meant there was a period where the biological substrate that might help explain mental illness was largely ignored, to an era where everything except the possible involvement of the brain is ignored. So how did that happen?
Well, I spoke earlier about the pessimism that had descended in the late nineteenth century, and the attempt to find a way out of this cul-de-sac that the profession found itself in. Obviously one dimension of that I spent a good bit of time covering was how this move towards biological remedies reflected theories that focused on the body. But an alternative therapeutic response was possible and arose particularly with respect to what we think of as milder forms of mental distress. This was an approach that emphasized the psychological dimensions of mental illness, that focused on the mind as not only the source of the problems, but also as the solution to the problems.
There were many people who thought along those lines. Of course, the name we’re all familiar with is Sigmund Freud, and the development of psychoanalysis in the late 1890s and into the early twentieth century. Freud famously visited America, where he went to Clark University, to a conference, and everybody assumes that conference was all about Freud, but it actually wasn’t. Freud was almost an afterthought. This was the anniversary of the founding of what was meant to be an institution modeled on German research universities, and many people, including a number of Nobel Prize winners, addressed that conference. But Freud came to America along with Jung, who was still his heir apparent. He later had a major quarrel and excommunicated the man he had previously called his Crown Prince. At Clark he gave lectures that provided a very appealing and somewhat more optimistic version of psychoanalysis than was generally his view. He won some converts, on that occasion, to the idea that psychic conflicts were the fundamental basis of people developing mental disturbance. But it’s important to understand, this was a very small number of people in the 1910s and 1920s.
Psychoanalysis appealed to a very small segment of the population. It won some hearing in the arts and on Broadway and in the movies. But the number of psychoanalysts in America circa 1930 was about 400, and if they treated patients five times a week for an hour, that meant they could maybe treat eight patients each. So, you do the math. There were hundreds of thousands of patients in mental hospitals. There’s this small market out there.
What begins to transform that is in part the rise of Nazi Germany and Hitler’s attempt to kill Jews. Jews were a large fraction of the psychoanalytic community. Freud managed to escape to London with his daughter. Other analysts come to America and about doubled the number of analysts in this country. And then World War II breaks out. We all know in World War I, under the pressure of industrialized warfare in the trenches, that troops broke down. We’ve all heard of shell shock, which was initially, as its name implies, blamed on the concussive effect of shells shaking the body and inflicting damage on the brain, but increasingly came to be seen, not as that, but as a psychological reaction to the horrors of war.
It is important to understand that the rate of psychiatric casualties among American troops was two to three times as high in World War II as it had been in World War I. Everybody thinks that that was the greatest generation – the people who survived the Great Depression and rescued us from Hitler and Hirohito. But it turns out in modern wars people see and do things that they find extraordinarily difficult to cope with, most of them, thank goodness, because they run counter to deeply embedded notions in all of us. So breakdowns among the troops were far greater than the generals expected. When a third of a quarter or a third of troops in combat came down with psychiatric symptoms, it was a huge problem, and the military brass had to respond.
It affected morale, it also affected fighting efficiency. Consequently, and unexpectedly, military psychiatry came to the fore. People had to be trained very rapidly to administer some sort of psychiatric treatment, because there weren’t nearly enough psychiatrists available to perform these tasks. The demand for therapists also provided an opening for psychology, which had previously been an almost entirely academic discipline, to begin getting involved in what were largely psychotherapeutic responses to breakdowns among the troops. After the war was won, many of these psychiatrists and psychologists wanted to continue in this vein, and there were something like 50,000 or 60,000 veterans who were confined in VA hospitals with mental problems, and hundreds of thousands on psychiatric pensions.
One further consequence of the mental problems experienced by many veterans was to make more plausible the idea that mental illness was the product of these socially and psychologically stressful events. This was perhaps something that may have briefly diminished some of the stigma that surrounds mental illness. And so, in the years after the war, we saw developing an outpatient psychiatry. It was a psychiatry that borrowed heavily from Freudian ideas, which now proved attractive to much of the profession.
Psychoanalysis was a very prestigious branch of the profession. It was the branch of the profession that came to dominate in medical schools, where new recruits to the profession were trained. And on a broader front, it entered the popular culture in all kinds of ways. Hollywood in particular embraced Freud. You could watch a film like Alfred Hitchcock’s Spellbound, which has a psychoanalytic consultant overseeing things, and opens with the notion that we have found the key to unlock the mental troubles. Finally, we are told, we’re able to cure those afflicted with mental disturbances. The extraordinary dominance of psychoanalysis extended elsewhere in the universities, especially in the social sciences. Freud’s ideas were culturally very powerful. Yet the traditional mental hospitals remained a huge presence.
The peak of American mental hospital census occurs in 1955, when there are about 560,000 patients in mental hospitals on any given day. In our own time, in contrast, although our population has doubled, there are fewer than 40,000 in mental hospitals on any given day. That’s a story, obviously, that has to enter the picture. What happened here? What occurred with these patients? Why did we run down mental hospitals? Was it simply that we developed effective drug treatments, or were other factors involved? Part of my burden in this part of the book is to discuss deinstitutionalization and so-called community treatment or community care, and to show in fact that there is no community to which these patients are returned, and there is essentially no care. The manifestations of this on-going failure of public policy are everywhere. They are all too visible in most American cities.
We see decades of American psychoanalysis when it is dominant and then suddenly, it’s not. It’s a bit as if you were around, in the late 1980s. Communism looked incredibly strong, and then suddenly the Soviet Union and its empire dissolved. Or if you look to Iran, the Shah’s regime seemed to be powerful and in control, and then suddenly collapsed. Psychoanalysts must have thought they would dominate psychiatry in the United States for the foreseeable future. And yet in the late 1970s and particularly in the 1980s, they almost vanished, they imploded. It’s not that psychoanalysis has entirely disappeared. There’s still a market for books on Freud and psychoanalysis. There’s a small niche market for analysts peddling their wares. But psychoanalysis has gone from controlling departments of psychiatry in virtually all the major medical schools to being reduced to a remnant. It’s hard to even recruit people to the profession. Now the average analyst treats one and a half patients a week, which is hardly a basis for a stable practice. Why did that happen? How did that happen? Why do we see this shift that we can date pretty precisely to 1980 or a few years either side of that date?
From 1980 onwards, American psychiatry shifts back to biology. It becomes, in Eisenberg’s terms, a mindless psychiatry. It disdains the psychological and the social dimensions of mental illness, and increasingly sees mental illness as purely brain disease. That’s obviously connected with the collapse of the asylum system, and that whole enterprise forms the central focus of the last third of the book.
As historians, we know change doesn’t typically happen by date. But in 1980 something profound happened. The American Psychiatric Association revised its Diagnostic Manual. It had published the first edition in 1952, and there was a second edition in the late 1960s, and nobody paid much mind to those. Psychoanalysts thought that putting diagnostic labels on people was a waste of time, and didn’t care about it. What changed?
Well, there had been a number of studies of how reliably psychiatrists could diagnose mental illness. If you presented the same patient to two different psychiatrists, would they come to the same conclusion? Would they agree that something was wrong? And if they agreed something was wrong, would they put the same label on it? Would they say this is a person with manic-depressive illness, or bipolar disorder, to use modern terminology, or this is a person with schizophrenia, or this is a person with major depression, or whatever?
The academic studies showed that agreement was incredibly difficult to achieve. At best, psychiatrists agreed about 50 percent of the time. Now, if you went to a doctor and said, have I got tuberculosis or pneumonia, and half said, you’ve got TB and the other half said you’ve got pneumonia, you wouldn’t be very satisfied with that diagnosis. But for a long time, this accumulating body of information about the defects of psychiatric diagnosis was confined within the profession, it wasn’t something that the public paid a lot of attention to, and the psychoanalysts who dominated the profession said this is trivial stuff. Who cares? Those labels don’t matter.
What changed that in important ways was a study that got enormous media attention and seems to show the psychiatrists, as the author of the study said, couldn’t tell who was mad, and who was sane. That study was done by a Stanford social psychologist named David Rosenhan and it appeared in the pages of Science, which is along with Nature, the most prestigious general scientific journal, and often the source of journalistic stories. The title of the paper was “On being sane in insane places,” and what Rosenhan claimed to have done was to send eight pseudo patients (actually nine pseudo patients, but he dropped one later on) to mental hospitals, some private, some public, some well-resourced, some impoverished. He had them show up, having been screened to make sure they were psychologically normal, and they were to go in and say, I’m hearing voices, they’re saying things like thud, and empty and hollow, and I’m very distressed, and then they were to behave perfectly normally. That was it. What would happen? According to Rosenhan, all twelve times the pseudo-patients showed up, they were admitted. All but one of them was diagnosed as schizophrenic. The one in a ritzy private institution was given the more hopeful diagnosis of manic-depressive illness. And for a period ranging from 19 to 58 days they were stuck in the hospital. One of them had to be rescued. Psychiatrists, it seemed, couldn’t reliably distinguish people who were faking it from people were really mentally disturbed.
The publication of this paper created a huge crisis. Rosenhan was approached about a job at Harvard, and he was given a large advance to write a book about his study. For years it was a study that had a very profound effect. The American Psychiatric Association’s leadership within a few weeks, convened a crisis management meeting. “What are we going to do? This is a disaster. The public thinks we’re fools.” They decided they had to revise their diagnostic manual. They named Robert Spitzer of Columbia, who had been trained in psychoanalysis, but had become completely disenchanted with it, and put him in charge of running the process. Spitzer wanted to rid American psychiatry of all psychoanalytic clap trap as he saw it and assembled the group of people who largely shared his beliefs. He drew particularly on the one major university, Washington University in St. Louis, where psychoanalytic ideas had never received much of a hearing.
Over the space of the next half a dozen years he produced this new manual, which finally appeared in 1980. The problem of how to get psychiatrists to agree on diagnosis was to be solved by avoiding all speculation about the origins of mental illness and defining it in terms of symptoms. Psychoanalysts regarded the treatment of symptoms as a waste of time. It was like playing whack-a-mole. You smash this symptom, and another one popped up somewhere over here. But Spitzer and his team believed that if you used the symptomatic approach, you could get general agreement on what was wrong. So, if you had six of ten symptoms, you would be diagnosed as schizophrenic. If you had five of nine other symptoms, you’d be diagnosed as something else, and that kind of tick-the-boxes approach came to dominate American psychiatry.
It was very useful to two groups of actors. Insurance companies were increasingly providing some coverage for mental illness, but they wanted some limits on it, and they wanted to be sure people really were what they claimed to be. A reliable diagnosis was very positive for them. Likewise, the drug companies needed homogeneous populations to test their drugs on, so they could get FDA approval, and they were making humongous profits from the new drugs. So there are various pressures that push this new diagnostic system to a successful conclusion.
The new approach, however, was disastrous for psychoanalysis. Because psychoanalysts were still a majority of the profession, the very politically astute Spitzer allowed a last-minute compromise that other people on his task force hated. He put bits of psychoanalytic terminology in parentheses after some of the diagnoses. Seven years later, when the revised version of the manual appeared and psychoanalysis had lost the war, all those references disappeared. So now you had a diagnostic system that seemed to solve one set of problems, but in fact created new ones.
I should say at this point that the Rosenhan study that seemed to be such a powerful demonstration of the drawbacks of psychiatric diagnosis has recently been shown to be a fraud, one of the great scientific frauds of the twentieth century. Many of those pseudo-patients probably didn’t exist at all. And we know this thanks to the remarkable work of an investigative journalist Susannah Cahalan in New York, who got access to Rosenhan’s papers, spoke to his colleagues, spent years trying to track down the pseudo patients, found three of them, and basically was led to the conclusion the others didn’t exist.
Rosenhan, it turned out, had shown up – he had been at that point teaching at Swarthmore College in Pennsylvania – he had shown up at Haverford State Hospital, and his medical records were in his files, which was a huge mistake on his part. Because it turned out that David Lurie, as he called himself, showed up, saying that he was suicidal, displaying all kinds of very serious symptoms, saying he was having to wear a copper pot over his ears to ward off the voices that were coming from the outside, that he was useless, that the world would be better off without him, spoke very haltingly, showed all the signs of somebody in a very deep depression, and not surprisingly, was admitted. His account of his own case in the Science paper was completely falsified. What had gone on with the other patients? Along the same lines, the ones that Susanna was able to track down failed to confirm what Rosenhan had said about them. It became increasingly obvious as she shows conclusively that this whole study was a fiction. But it didn’t matter. By then the revolution it had helped to usher in was completely in place.
There was another edition of the manual in 1994 (DSM IV), a revision of that in 2000, and at that point American psychiatry said, well, yeah, we recognize there’s a problem of building our diagnoses on symptoms. That’s the way eighteenth-century medicine went about diagnosing general illness. We really need to rework our diagnostic system based upon all the recent research in genetics and neuroscience. They argued they were beginning to understand what causes mental illness, and needed to develop diagnoses along those lines, reflecting the underlying pathology. In early 2000, a task force was set up to revise DSM. Its members announced they were going to completely revamp things, and it was going to be a very different manual. In reality they couldn’t do it.
One of the things I discuss in the book is the work on the genetics of mental illness and the newer work on neuroscience that has moved forward at an accelerating pace. Huge amounts of money have been invested in these approaches. But the clinical payoff has been zero essentially. Rather than providing us with a clear account of where schizophrenia or bipolar disorder or major depression come from, and tracing it back to the underlying genetics and neuroscience, that research has actually tended to undermine those categories. Because earlier family studies seemed to show mental illness ran in families, the expectation had been that we would get a clear, genetic etiology of these things.
Once we had PCR, the technology that allows us to chop up bits of the genome, and once we decoded the human genome, which we successfully did by 2003, the path forward was expected to be simple. In reality, despite the very best efforts and mobilizing vast amounts of data, it turns out that we haven’t been able to discover the genetic roots of any major form of mental illness. There is no Mendelian gene or set of genes that causes these things. The genetic loading that bears upon mental illness, it turns out, is of a very general sort, and the genetics of schizophrenia, bipolar disorder, major depression, overlap. Moreover, to date, genetics explain somewhere between seven and ten percent of the variance, if we aggregate all hundreds of different genetic variations as some in the field have conceded. Oddly, mental illnesses seem to be among the least genetically produced disorders.
Likewise with neuroscience, we haven’t been able to uncover the etiology of these syndromes. So, if you ask what causes schizophrenia, or what causes bipolar disorder, the honest answer to that is, we don’t know, and all that work really has not produced anything of clinical value. Very often, when I talk about this, people challenge me and go, well, you’re not a clinician, you’re a sociologist, why should we trust what you tell us about these matters? To which I say, well, Thomas Insel was the head of the National Institute of Mental Health for twelve or thirteen years before stepping down in 2015, and when he stepped down he gave an interview to MIT, in which he said (and he’s recently repeated that in the book he published last year), you know, I’ve funded some really cool science and cool scientists over this twelve-year period, some great work in genetics, great work in neuroscience, really cool stuff, and I’ve spent upwards of 20 billion dollars, and the needle for the treatment of serious mental illness hasn’t moved an inch.
Things haven’t got better in the last eight years. In fact, people with serious mental illness die on average 15 to 25 years sooner than the rest of us, and that gap is growing, not shrinking. On another front, one needs to acknowledge that modern drugs are something that help some patients, allowing them to manage their symptoms. They’re not psychiatric penicillin, and they come with often very serious, sometimes deadly side effects. If you’re on antidepressants, particularly SSRIs (selective serotonin re-uptake inhibitors), those are often very difficult to come off, perhaps impossible in some cases. So people are trapped on these drugs which have powerful and debilitating side effects. And yet, having made billions of dollars in these markets, the major drug houses, beginning in about 2010, have started to abandon the field. They’ve shut down further research. So what we’ve got are an extremely imperfect set of remedies.
We shouldn’t overlook the fact that the drugs have benefits for those for whom they work. We shouldn’t dismiss this, we shouldn’t say there has been no progress. I think that it is very important to help people control some of the distressing symptoms, the life-distorting symptoms of their mental illness. It is not something to be sneezed at, but the problem here is, first of all, for the majority of the mentally ill, they don’t achieve those results; second of all, the margin of improvement is often quite slight; and thirdly, the improvements often come at a heavy price. There is no free lunch in medicine or in psychiatry, as in so many other areas of life. Whenever you take an aspirin you run the risk of side effects which can be quite serious – if you start hemorrhaging in your stomach, for example – and many drugs come with the possibility of not just some therapeutic advantage, but also costs.
With psychiatric drugs these downsides are really quite major, and for a long time were ignored. The first generation of antipsychotics, for example, were associated sometimes with an incurable, unbearable restlessness, pacing, patients were constantly in movement, something very distressing and disturbing for people around the mental patient, let alone the patient him- or herself. Parkinson-like symptoms for some patients, or what was called tardive dyskinesia, a very serious and incurable iatrogenic problem (medicine caused problem), where jerky movements at the extremities, and particularly the facial muscles, quacking noises and other kinds of disturbances were found in anywhere between 15 and 60 percent of patients on these drugs, and often were interpreted by lay people as signs of madness. You see somebody walking towards you making those noises and jerky movements, and you recoil. In fact, these symptoms are the product of their treatment.
In the late 1980s, this intractable problem became more and more obvious and difficult to ignore. Drug companies looked for alternatives, and there emerged a group of second-generation drugs, often called atypical antipsychotics. One of them really wasn’t the second generation. It was a very old drug that had been discarded because in some patients it produced a blood disorder that was fatal but it now re-emerged. If you watched your white blood cell counts carefully, you could use it. It seems to be somewhat more effective than some of the early drugs, and it was less likely to cause things like tardive dyskinesia.
Then a host of other drugs came on the scene which could be patented, and therefore cost 10 or 20 times as much as the older drugs that had run out of patents protection. These were touted as great improvements that avoided these earlier side effects. Then in 2005, New England Journal of Medicine published the results of a study that the National Institute for Mental Health had funded rather than the drug companies comparing three of these new drugs to an old one from the 1950s. Did the new ones work better? The answer was, no. Did they have a different side effect profile? A little bit. But they had new side effects that were very disturbing. People put on 30 to 60 pounds over the course of a year, they develop metabolic disorders, heart disease, diabetes, life-threatening conditions. This study, known as the CATIE study, compared these two generations of drugs. Therapeutically, there really wasn’t a real difference. Results varied a bit by drug and the side effect profile varied. But in every case, there were serious drawbacks.
Then there is the other often overlooked result of this study. Depending on which of the four drugs the patients were on, between 67 and 82 percent of the patients in the trials dropped out. They dropped out either because the drugs didn’t work or because the side effects were intolerable. Think about that for a minute. These are the most modern treatments, and only about a quarter or a third of the patients stay the course. Obviously, what we have here is a very imperfect set of interventions, and as I’ve stressed, drug companies have largely moved out of this arena. Now they don’t see any novel targets. They suffered considerable reputational harm, because it turns out they often manipulated the results to present them in the best possible light and suppressed data that revealed the drawbacks of the drugs. They were fined sometimes billions of dollars for mismarketing. So they’ve largely abandoned the field.
What we’re left with is a set of treatments that for some people offered relief but for many others don’t. There seems little prospect, unless some start-up develops a novel approach, that we’re going to see better drug treatments. The other thing that I think marks the last 40 or 50 years, this shift to a mindless psychiatry, as Leon Heisenberg would have it, is that we’ve been taught that mental illness is brain disease. Take depression: For a long time, people were assured, you just lack sufficient serotonin in the brain and by taking drugs that kept the level of serotonin higher, you were going to be happy. Well, that’s a scientific fallacy. It’s great marketing copy. Psychiatrists now belatedly are acknowledging the defects of the chemical imbalance theory. Likewise a different neurotransmitter, dopamine had been seen as a possible cause of schizophrenia. That hypothesis has also faded away. It’s become clearer that that’s far too simplistic a view.
More generally what I would say looking at this history is that this distinction between psychological and somatic approaches to understanding mental illness is a thoroughly mistaken one. The idea that the biological and the social can be completely torn apart in this fashion strikes me as a great mistake. We’re born with brains, for sure, and I would be astonished if some of the serious forms of mental illness don’t have a biological component. I would also be astonished if that’s the whole story. Beyond that, this attempt to rigidly separate the social and the biological is clearly wrong.
It’s wrong in the following sense: Yes, we’re born with a brain and a body that has certain features. But our brains remain remarkably plastic for decades. They are the joint product of the biology that we bring into the world and the experiences we have, the environment we’re raised in, the culture we’re part of. The brain wires itself differently accordingly. So this attempt to separate these two realms is profoundly intellectually mistaken. They’re so tightly bound together, that to focus on one to the exclusion of the other, whichever direction you go, strikes me as seriously misguided. So, as I look to the present, I see a psychiatry in profound crisis. Its remedies are patchy, and its understanding of pathology limited, in the extreme.
Finally, there’s a whole realm I haven’t had a chance to talk about, and that’s the rise of psychological treatments, and that is another strand of the story that I tackle in the book but can’t address here. I’ve already gone on far too long. I think the profession has to come to terms with the complexity of mental disorder, moving away from this exclusive emphasis on brain disease, looking at things more broadly when it comes to tackling the problems associated with mental illness. Yes, basic research is vital, trying to understand, as difficult as that process turns out to be, where mental illness comes from, which might provide us with new ways of intervening. But while we’re waiting for those developments, and by gosh, we’ve been investing a lot of time and money, and very smart people, in this process, without tangible result, perhaps we also need to be looking at ways in which we can make life more bearable. One of my fellow historians once said of mental illness that it is at once the most solitary of afflictions for the person experiencing it and the most social of maladies for everyone around them because the impact of mental illness is not confined to the patient, to the suffering individual. It has ramifications for everyone around them, and if we could develop effective programs to help mitigate some of those problems while we’re waiting like Godot for God knows what, that would be an important shift.
I didn’t really complete the story of deinstitutionalization and its problems here, but I do that in the book. It’s clear to me that it wasn’t the product of the advent of new drug treatments, and there’s a lot of evidence to show that’s a false account, but rather was the result of social policy choices that were made at the state and the federal level, and indeed have been made internationally. What we did was tear down the asylum in fairly rapid order without really creating any alternative structures to handle the problems that serious mental illness brings in its train.
So we face an environment where the stigma that’s always attached to mental illnesses has, if anything, intensified. I see the new mayor of New York coming in immediately talking about Draconian new policies involving the police to deal with the problem of sidewalk psychotics. I see the new mayor of Los Angeles saying the same thing, the new governor of Oregon saying the same thing, the mayor of San Francisco declaring a public state of emergency, but no really satisfactory alternatives.
But I don’t like to end on a pessimistic note. I do like to think that it would be possible with clearer understanding of where we’ve come from, and what the current state of play really is, not what we wish it would be, that we could improve things. One of the things that this history has told me is utopian claims that paradise is just around the corner are spurious, and we shouldn’t embrace them. But it is possible to make some changes for the better, and that won’t happen as long as we keep pursuing narrowly defined ways of approaching what is an enormously complicated problem.
One of history’s ironies is that we built mental hospitals to rescue the mentally ill from the jails and the prisons and the attics. And now we’ve abandoned the mental hospital, and the mental patients ended up in the gutter, in flop houses, and in jails. The three major centers of inpatient treatment in the contemporary United States, if that’s the right word, are the Los Angeles County Jail, The Cook County Jail in Chicago, and Rikers Island Jail in New York. So we’ve almost come full circle.