I spent a week in an in-patient psychiatric unit in Cheyenne, Wyoming after a suicide attempt (hanging via a six foot long cell-phone cord in the closet of my hotel room, if you're curious). While there, my dosage of antidepressant medication was doubled.
Once institutionalized, I was placed on a 72-hour and then later 7-day hold by the state. The unit ran a basic group therapy program that repeated each week (I only had to suffer through it once). In this program, we were taught such inanities as how to create self-affirmations, write them on strips of paper, and put them into home-made paper boxes. Most patients did not bother with therapy, choosing instead to sleep their days away in darkened rooms. The exercise room, supposed to be open for an hour each day, was opened only twice while I was there, both times at my insistence, and both times only for 20 minutes. Staff who were supposed to verify that patients were still breathing every 15 minutes throughout the night failed to do so.
Pervasive security cameras in public areas had gaps in coverage. Staff meant to be supervising the replacement of utensils after each meal were lax--I know, because I absconded with a spoon just to see if I could. Twice, upon receipt of clean clothing, I found pen caps and medical paraphernalia in cuffs and pockets that I was not supposed to have, as such items were considered choking hazards. Magazines and papers that were supposed to have paperclips and staples removed slipped through the staff checks. The hospital kitchen, upon noticing that I ate only (a large) dinner and ordered tea for breakfast and lunch (while exercising before breakfast daily--the only person on the unit to do so), called me to explain that I wasn't eating enough calories to sustain myself. Meanwhile, other patients who ordered large helpings of ice-cream and brownies with plates consisting of (at the same meal) buttered pancakes, spaghetti, and cheese-burgers went unmolested.
I escaped the hospital only because the resident psychiatrist failed to file a medical report with the state when my seven-day mandatory stay was up. She threatened to have me hospitalized for 180 days if I didn't voluntarily agree to stay longer; my lawyer fought against that threat and won due to the psychiatrist's failure to follow court procedure. I left the unit against medical advice. My stay there afforded me the time to work through the Throne of Glass series in its entirety, but did little else for me.
I make no claim to being well during this period. I was in a dark, suffocating place in my life. I don't even make a claim that hospitalization at that time was unnecessary--I went there voluntarily, after all, to keep myself safe, and I happened to go at a time in history and with a diagnosis that didn't leave me substantially worse off than before I went.
But my experience in psychiatric care, both before and after my hospitalization, has been a horror story--make no mistake. It was with my history in mind that I picked up Mad in America, by Robert Whitaker.
I've never been into horror stories, and so as I was reading I found myself time and time again turning the book over, putting it down, and gazing bleakly off into the distance in dismay and disgust at the history of psychiatry in this country--a subject I heretofore didn't think much about. I certainly didn't think such a history would be so full of outright abuse, neglect, and intentional exploitation of patients for monetary gain. In order to get through this book, I had to return to old habits instilled in high school--a close read with a pen (Thanks, Mr. Morris).
Only such academic, emotionally removed treatment of the subject allowed me to finish reading the book, as the voices of the patients Whitaker detailed in these pages hit too close to home for me in many ways. Whitaker, in delving into the world of "bad science, bad medicine, and the enduring mistreatment of the mentally ill" writes a real-life horror story spanning from before the founding of the U.S. and continuing through to today.
If you aren't on psych meds yourself, or don't have a relative or friend who is (you might be surprised at how many people you know are on meds, though), it's probably difficult to care about the treatment of the mentally ill in our society. There are much, much bigger problems going on, some of them already detailed in this blog. Remember, though, this line from Sirius Black in Harry Potter: "If you want to know what a man’s like, take a good look at how he treats his inferiors, not his equals."
The way our society treats our mentally ill is not just a measure of the character of the people who directly care for and treat them--psychiatrists, nurses, and the like--but also a measure of what the public is willing to tolerate. And we've been willing to tolerate outright torture, worthy of the Nuremberg Trials, for blameless people scared out of their minds, all in the name of "good" medicine.
If none of the above bothers you, dear reader, consider also that you, too, might one day become mad. The line between sane and insane is thin, and can and has been moved for political and financial purposes.
In the 1750's to the 1800's the treatment of the mad in asylums did not include, well, treating them. Instead, they were locked into hospital wards that served as jail cells, beaten by their keepers if they became unruly, and their ravings offered as spectacle to the visiting public for four pence. Honey, shall we go to the zoo or the madhouse today? Oh I don't know dear, I did so love poking that one great brute with a stick the last time. He was frightful!
Newly minted American doctors (mostly trained in Europe) arrived on the scene in the 1800's, with a variety of theories as to why the mad were mad. These doctors believed the mentally ill were animals, beyond the reach of the Enlightenment philosophy that made reason the difference between man and beast. In order to bring the mad back to themselves, the physicians in charge of them must treat them with "tortures and torments in a hovel instead of with medicaments." These tortures included bleeding the patients until they fainted, inducing nausea through various substances, starving the patient, creating caustic, infected blisters on the scalp with mustard powders, nearly drowning the patient with a variety of contraptions built for the purpose (or simply by throwing him unexpectedly into a body of water), and placing the patient into a nausea, pain and vertigo inducing chair designed to spin and sway.
In 1817, a group of Quakers opened the first moral hospital for the treatment of the insane in Philadelphia, working from a blueprint from their brethren in York, England, who had founded a small hospital for their community in 1796. The philosophy for treatment in this and other similar hospitals was a radical departure from the scientific, medically established treatment ideas of the late 1700's. In these new facilities, the mad were treated with kindness and gentleness, given hot food, comfortable beds, baths. Allowed to walk around the beautifully kept grounds and induced through example and gentleness to wear clothes and keep themselves tidy. They were provided a program of activities and encouraged to garden, sew, read, take carriage rides, and so on. Therapy, when it was offered at all, consisted of encouraging patients to develop a sense of shame towards their previous behavior and to use their willpower to avoid mania and attacks of depression. A former patient said, "the Pennsylvania Hospital for the Insane was the finest place in the world to get well."
Outcomes for patients in hospitals of this sort in the beginning and middle of the 1800's were remarkable. Hospitals reported that 50%-80% of their first-year patients were discharged as cured or improved, never relapsing once discharged or able to return to their families with a good chance of maintaining functionality and reason. Even those who had been mad for more than a year could be cured with kindness and respect. Further, staff members were rarely injured by wild patients, unlike in traditional facilities where attendants used whips and restraints to guarantee their own safety from the mad.
This breath of fresh air was not to last. Not all patients could be improved and discharged, and as the population of the U.S. grew so too did the numbers of the insane. Small and luxurious moral hospitals were also expensive to operate, both generally and on a per-patient basis. Hospital budgets shrank. Physicians--squeezed out of influence at moral hospitals, and hence out of the mad market--formed foundations and societies, built their own asylums, and lobbied for laws and regulations that gave them back the power to treat patients with "medicine." As the hospital populations grew (and grew to include all manner of "insane"--from alcoholics to the senile elderly) and doctors became more involved in patient care, physical restraints, tranquilizers, bloodletting, claustrophobic solitary confinement, and the like all made a comeback. The goal of these hospitals wasn't to improve the patient, but rather to keep the wards orderly and quiet, and to keep costs down. This theme becomes the main driver of psychiatry for the next 150 years.
In the early years of the 20th century, Darwin's theories prompted the appearance of a philosophy of eugenics. Men with money and Ivy league educations--John D. Rockerfeller, George Eastman, Irving Fisher--brought money and political pressure to bear on social and medical policies designed to cull the deficient from the breeding population. Sterilization of the mentally ill became the main "treatment" for their schizophrenia, depression, or mania. Once treated, patients could be released back into the community without any concern that they would pass their "defective germ plasm" on to their offspring. By 1945, 45,127 Americans had been sterilized. An additional 4,000 were sterilized in the 1950's. Those who were permanently institutionalized spent their time in "buildings swarming with naked humans herded like cattle...pervaded by a fetid odor...heavy...nauseating...living under leaking roofs, surrounded by moldy, decaying walls, and sprawling on rotting floors for want of seats or benches." Buchenwald: Not just for Nazi Germany anymore!
Other therapies were tried in this same time period, from the wanton removal of teeth and other "unnecessary" organs to "hydrotherapy"--painful showers of freezing, high pressure water. Insulin comas, which caused brain damage, and metrazol, which caused terrifying, violent, bone-fracturing seizures (and then eventually brain damage), became mainstays of asylum medicine. They were followed by electroshock therapy (which caused brain damage) and the frontal lobotomy (which caused brain damage). More than 1 million Americans would be subjected to electroshock and 50,000 received frontal lobotomies in the 1940's and 1950's, with 10,000 lobotomized in 1950 and 1951. These treatments were designed to quiet and sedate patients and make the lives of asylum staff easier. Occasionally, children as young as four were treated with lobotomies. After WWII, the International Red Cross "determined that prisoners in concentration camps who had been electroshocked should be compensated for having suffered 'pseudomedical' experiments against their will."
As psychiatry moved into the latter half of the 20th century, it embraced newly invented pharmaceutical drugs. Chlorpromazine (Thorazine) was the first of these drugs, introduced to the public in 1953 as an antipsychotic. It was the first such medication intended to allow schizophrenic (there was no clear diagnosis for schizophrenia, and so a wide swath of people with different conditions were labeled schizophrenics) patients to "lead relatively normal lives and not be confined to institutions."
Except that's not what Thorazine, and a bevy of other similar "antipsychotics," did. When these drugs were first introduced, they were described by psychiatrists and doctors as "chemical lobotomies." Patients still experienced their delusions, but were less troubled by them. They lay motionless, awake in bed, showing little interest in anything. Their very souls were suppressed, their emotional lives bleak and empty. One patient described her experience as follows:
I became alienated from my self, my thoughts, my life...my tongue was so fuzzy, so thick...Always I needed water and even with it my loose tongue often could not shape the words. It was so hard to think...more often than not I would fall into a stupor of not caring...In eight years I did not read an entire book, a newspaper, or see a whole movie...I could not escape my drug prison. The drugs made me constipated as well as ravenously hungry...they caused me to gain weight...I took laxatives and suffered as I watched my body grow heavy and distorted. My hands shook so I could barely hold a pencil and I was afflicted with...a Parkinsonian 'side effect' of these chemicals. For this I took a drug called Kemadrin, and if I missed a day or dosage, my shoulder muscles would tighten into excruciatingly painful knots and my legs would go on wildly out of control...These drugs are used, not to heal or help, but to torture and control. It is that simple."
Side effects, which included Parkinsonism-like symptoms, were almost universal, serious and long lasting. In the 1980's, more than 90,000 Americans developed permanent deficiencies in motor function as a result of taking antipsychotics. Lawrence Kolb, former director of the U.S. Public Health Services' mental-hygiene division, stated that neuroleptics like Thorazine were "physically more harmful than morphine and heroin." National Institute of Mental Health studies in 1967 showed that patients medicated with neuroleptics were more likely to be re-hospitalized than patients who had not received any drug treatment. Four years later, another study showed that patients who had never been treated with drugs had the lowest relapse rate of 301 patients in a drug-withdrawal study. These studies demonstrated that drugged patients became biologically more prone to psychosis--even when they were regularly and reliably taking their medication.
But none of these drawbacks mattered to the prescribing psychiatrists. Drug companies began a full-scale marketing effort, complete with glowing articles in the New York Times and paid-off physicians who conducted biased research demonstrating the safety and effectiveness of the new neuroleptics. In the decade after Thorazine was introduced, researchers published 10,000 articles in a variety of medical journals, most hailing Thorazine as a wonder drug. Cheaper and "safer" and easier to administer than lobotomy, electroshock, or metrazol, antipsychotics were big business for the drug companies, psychiatrists, and the media. In 1953, Smith, Kline and French made $53 million. In 1970, revenues were $347 million, with Thorazine bringing in $116 million. The American Medical Association received $2.6 million a year from drug company advertisements in 1950. A decade later, they received $10 million from drug company advertisements. Journalists could earn up to $17,000 from a drug company (more than a year's salary in the 1950's) for a single magazine article praising a new neuroleptic. An American Psychological Association (APA) officer, Fred Gottlieb, confessed that the APA, in accepting enormous sums of money from pharmaceutical companies, "perist[ed] in ignorning an inherent conflict of interest."
A half-century of more or less the same story follows. Neuroleptics became the drug of choice for treating schizophrenic patients, who were frequently not warned about the likely effects of the drugs. Stronger drugs, like Prolixin and Haldol, came to market. Frequent side effects included extreme inner anxiety, restlessness, enormous pain, and assaultive, violent behavior. The story of the violent, dangerous schizoid was born in the 1960's as a result of these drugs--not as an inherent problem with the disease itself. As time went on, these drugs were prescribed in institutions housing the elderly, juvenile delinquents, and the retarded--likely not for their curative properties, but for their tranquilizing ones.
In the late 1980's, outright falsification of results, enormous sums of money (upwards of $5 million given just to two researchers who conducted initial trials) and the fudging of information about patients so they would meet eligibility for research trials, brought several new drugs called atypicals to market amid a media and medical fanfare. Patients who participated in trials for these drugs weren't warned of the likely, known side effects of the new drugs or of the problems associated with the abrupt withdrawal of their own medications, and were frequently misled as to the purpose of the studies. One out of every 145 patients in trials for these drugs died, but the negative results were never reported in the published journal articles or media. Drug trials had a high drop-out rate, with sometimes two thirds of enrollees dropping out and going off the radar (so the death rate may be higher than 1/145). A callous disregard for patients' health was typical of the researchers running the studies: "We don't care about how the patients are doing. We just want to know how many people you have enrolled in the past week."
Olanzapine (Zyprexa), one of the latest atypicals prescribed for schizophrenia, has a bevy of side effects including development of Obsessive-Compulsive Disorder, serious weight gain, and an increased risk for cardiovascular disease and diabetes. Twenty patients out of 2,500 died in the trials (12 from suicide). Twenty-two percent of the trial patients suffered a serious adverse event during the trial. Two thirds of patients didn't complete the trial at all. Studies showing the efficacy of Zyprexa in decreasing schizophrenic symptoms suffered from the same study-design biases as earlier trials for similar drugs. Patients placed in placebo groups were abruptly withdrawn (instead of tapered off) from their medications (so they often would relapse). Multiple doses of Zyprexa were compared to one dose of a comparative medication (haloperidol)--so the medications were not compared at equivalently effective doses. The patients included in the studies for Zyprexa consisted of many who were non-responsive to haloperidol, so their inclusion made Zyprexa look better in comparison. After review of the biggest trial for Zyprexa, involving 1,996 patients, the FDA concluded that the study was "fundamentally flawed and provides little useful efficacy data." In contrast, medical journals used the very same study to claim that Zyprexa was superior to haloperidol. Newspapers stated that Zyprexa was a "potential breakthrough of tremendous magnitude." In 2000, sales of antipsychotic medications topped $2.5 billion.
Mad in America was published in 2002, so Whittaker's data ends there, but I did a little more digging.
In 2006, Ely Lily, makers of Zyprexa, paid 1.2 billion in settlements to 28,000 people who claimed they were injured by their drug. Between 2000 and 2008, the same drug brought in $36 billion in revenue for the company. The patent for Zyprexa expired in 2011, but the drug is still available and prescribed in its generic form, as are other drugs of a similar nature. Ely Lily (as well as other major pharmaceutical companies) has also been fined a number of other times by the FDA for encouraging doctors to prescribe their drugs for unapproved diagnoses and for non-specified patient populations.
What are we to make of this two centuries long story of death, torture, mistreatment, wanton pursuit of profit at all costs, and callous disregard for the health and well-being of mentally ill patients? Perhaps we ought to ask ourselves what would have happened if doctors had done nothing for these hundreds of thousands of patients?
In fact, we know the answer to that question. The World Health Organization (WHO) launched an eight year research study comparing long-term outcomes for schizophrenic patients in first world and developing countries in 1969. Their results conclusively showed that if you were going to be diagnosed with schizophrenia, it was much better for your long term health to live in Nigeria rather than the U.S. In India, Nigeria, and Columbia, 64% of schizophrenic patients at the five year post-diagnosis mark were doing well in their communities and asymptomatic. Another 12% were relatively well off, and 24% were still doing poorly. In a first world nation at the five year follow-up, 18% of patients were asymptomatic, 17% were okay, and 65% were still chronically ill.
In response to criticism over the diagnostic criteria used in this first study, the WHO launched a follow-up study and reported their conclusions in 1992: "The findings of a better outcome of patients in developing countries was confirmed." Again, 2/3 of schizophrenics in developing countries had solid outcomes, with the good-to-bad ratio reversed in developed nations.
The difference between treatment in developing and developed nations was simple. In developing countries, 16% of schizophrenic patients were on antipsychotic medication during the follow-up period. In developed nations, 61% of patients took antipsychotics during follow-up.
Drug companies, psychiatrists, and the general public have ignored not just their own sordid history of collusion, fraud, and mistreatment of the mentally ill, but also the results of these more recent studies, which cast aspersions not just on the efficacy of antipsychotic medications but also on the diagnosis, treatment, and even very nature of schizophrenia and other mental illnesses.
A 2001 study on Major Depressive Disorder (MDD) looking at the efficacy of escitalopram (Lexapro) characterizes MDD as a "debilitating chronic disorder typically with a course of recurrent acute episodes over many years in a patient's life." Given what we now know about the development of treatments for the mentally ill, how could we trust such a strong condemnation of any chance at a positive recovery without the help of medication? Everyone involved in the process of treatment has a financial incentive, and even those doctors who genuinely want to benefit their patients have been taught medicine based on a prescription model in medical school and exposed repeatedly to the largess of pharmaceutical companies while still in training.
What else can we doubt? Does a diagnosis of Attention Deficit Disorder doom your child to a life with adderall? What about bipolar, anxiety, PTSD, OCD, ODD? When our entire medical system is set up to promote profit over people, how do we as members of the public know who to trust and where to turn when we are faced with serious medical concerns for ourselves or our loved ones?
I don't know about you, but I'm moving to Nigeria.