Focus on Treatment, Not “Stigma”
Why do we accept the disorder and violence stemming from untreated serious mental illness?Carolyn D. Gorman
Jan 31 2024
City Journal / Archive
In 1993, New York senator Daniel Patrick Moynihan highlighted America’s troubling trend of “defining deviancy down.” Moynihan argued that Americans, facing rising crime and disorder, had responded by redefining these pathologies as “normal.” Thirty years later, his message resonates more than ever, and especially in the context of mental illness. Americans have come to accept extraordinary levels of disorder and violence stemming from untreated mental illness, with grave consequences for both the mentally ill and the public.
Consider a partial tally from late last year. A mentally ill man committed the deadliest shooting of 2023, killing 18 in Lewiston, Maine. A schizophrenic man in Brooklyn was arrested for killing his mother and stuffing her into a box. A depressed commercial pilot took illegal hallucinogens and tried to bring down an 83-passenger flight. An untreated mentally ill man known to police pushed a young woman in front of a subway car. A bipolar schizophrenic man, who had been in and out of hospitals for the “better part of two decades,” tried to commit suicide by jumping into the 9/11 memorial in Downtown Manhattan.
Since around 1960, American cities have seen growing numbers of people with untreated serious mental illness become perpetrators and victims of everything from quality-of-life offenses to violent crime. The trend has its roots in the deinstitutionalization and civil rights movements. In the 1960s, states moved thousands of patients out of state mental hospitals and into the community, a process that would persist in the ensuing decades. States saw the rise of anti-psychotic drugs and heard from “experts” claiming to know how to prevent mental illness. These developments, combined with strong financial incentives, led states to shutter or significantly reduce the censuses of their public psychiatric hospitals. States’ optimism that mental illness could be eradicated or no longer require institutional care was premature. The causes of serious mental illnesses remain unknown. And many patients, even with the help of medication, struggle to integrate into society, lacking the structure and routine provided by an institutional setting.
Activist pressure also contributed to the asylum’s decline. In the mid-twentieth century, the public became less comfortable with institutions, viewing them as mechanisms of social control. The emerging ethos of the civil rights movement, in tandem with grim reporting on overcrowded and generally squalid conditions in many asylums, inspired a narrative that labeling a person “mentally ill” was merely a means of stigmatizing them and denying them their individual rights. Advocates recast mental-illness policy as a quest to improve the nation’s “mental health,” blurring the lines between serious psychotic disorders and normal emotional reactions to adversity.
The availability of short- and long-term institutional care for people with psychotic disorders has diminished substantially—not owing to fewer cases but because, in addition to the driving factor of cost, a robust legal framework prevents involuntary, and in some cases even voluntary, commitment. Today, state-run psychiatric hospitals operate with 95 percent fewer beds than they had in the middle of the twentieth century, and their capacities continue to shrink. The mentally ill now constitute a disproportionate share of the homeless, jail, and prison populations. Save for the exceptional case when a person’s behavior presents an immediate danger to himself or others, seriously mentally ill individuals are left to “die with their rights on.”
Elected officials seem aware of these consequences. They continue to spend money on “mental health,” but without much progress in solving the problem. Despite the U.S. spending around $280 billion on mental health in 2020 alone, between 40 and 50 percent of individuals with serious mental illness receive no treatment.
Redefining the rightful focus on serious mental illness as a quest to improve the whole nation’s mental health has enabled the bloat of an entire industry, which now gets ample funding for programs related to vague social goals, such as reducing poverty, bullying, and unemployment. Little evidence suggests that these programs alleviate the disability caused by serious mental illness or help reduce rates of homelessness, violence, and incarceration.
The mental-health industry continues to cite “stigma” as the biggest barrier to treatment for people with mental illness. Research does not support this contention. “Considerable progress has been achieved in improving public awareness of mental illness and reducing its stigma,” researchers Cristina Mei and Patrick D. McGorry observe. “However, this has not driven substantial changes in access to and quality of mental healthcare.” And while billions have been spent on anti-stigma and mental-health-education campaigns, the public is more concerned about violence stemming from mental illness than ever before. Indeed, more Americans appear to associate mental illness with violence than was the case decades ago.
The stubborn truth remains that the best way to destigmatize mental illness is to pursue the policy that will most effectively reduce violence caused by mental illness: treatment. Mental-health practitioners recognize that “[a]ctive outreach by the necessary services and a more enlightened approach by courts will do a lot more to reduce involuntary treatment than an ongoing rights versus treatment debate.”
By redefining mental illness as a lack of “mental health,” the United States has lost its focus in mental-illness policy. We have come to expect the violence, disorder, and tragedy associated with untreated serious mental illness. Policymakers should dedicate their efforts to providing adequate treatment to the most seriously mentally ill, rather than trying to social-engineer mental illness out of society by calling it an experience common to all. Recent mental-illness-related tragedies need not be the norm. A clear-eyed policy approach that serves the few whose mental illnesses leave them gravely disabled—prioritizing such care over the rest of us “worried well”—might surprise us with its comparative success.
One of the old articles linked is pretty interesting:
Dying with Their Rights On
by Darold A. Treffert, M.D.
Prism Magazine, February 1974
On November 10, 1971, in a Midwestern university community, a 26-year-old woman name Rene and her 20-year-old companion named Angela stood for several hours on a busy street corner near the campus benignly and mutely staring at each other "as if in a trance," police records said.
There is, of course, no law against people staring at each other, but because the girls' strange behavior continued for so long, a crowd gathered, creating considerable confusion on that busy corner. The police arrived to investigate and took Angela and Rene to a nearby station for questioning.
But the two women refused to speak. They simply sat and stared at each other.The police were quite naturally concerned about the bizarre behavior of the two and eventually decided some kind of psychiatric evaluation was called for.
Police contacted the city and prosecuting attorneys' offices for advice. The opinion of both offices was the same. State law allows people to be held for observation only if they appear obviously dangerous to themselves or others. While the behavior of Angela and Rene was admittedly bizarre, they were, after all, merely staring at each other and not verbalizing any threats against themselves or others. Since neither homicidal or suicidal tendencies were obviously apparent, the attorneys agreed that the girls didn't legally "qualify" for psychiatric observation.
The police reluctantly, but necessarily, released the women that night. But they were to soon meet Angela and Rene again, and under tragic circumstances. Called to a campus apartment some 30 hours later, they found the two women on the kitchen floor, writhing and screaming in a self-made flaming pyre of butcher paper they had obligingly lit for each other in a suicide pact. Both were taken to the university hospital in a critical condition.
Although more than 20 percent of her body was burned, including her chest, upper arms, and upper legs, Angela lived.
Rene died. But she died with her rights on.
To me, thus case is reminiscent of the old medical school saw about "dying in electrolytic balance." Each of us can remember the compulsive chemo-clinician who solemnly occupied himself with the patient's sodium, calcium, magnesium, and potassium levels, along with a host of other electrolyte and trace metal levels, but scarcely noticed that the patient was slowly slipping away. Even though death came, the fact that it occurred with the patient's body in perfect electrolyte balance was somehow a morbid chemo-clinical triumph.
Such extraordinarily limited vision is now affecting psychiatry, and in the zeal to impeccably protect a patient's civil liberties, an increasing number of troubled and psychotic patients are, as I choose to refer to the situation, "dying with their rights on"- as in the case of Rene- a morbid clinical-legal triumph.
In Wisconsin, where I practice, a federal court decision in the class action suit of Lessard v. Schmidt (349 F. Supp. 107
has stiffened the state's commitment laws. In that decision, the new- and sole- definition of commitability became "extreme likelihood that if the person is not confined he will do immediate harm to himself or others." (My italics.) Other states, including Michigan where Angela and Rene lived, have recently enacted or updated similar laws, and this was surely done by well-meaning lawmakers, judges, and doctors.I submit, however, that in championing a cause they deeply believed in, their zeal may have exceeded their judgement. For there surely must be some reasonable middle ground between protecting the right of the psychiatric patient to remain free- a precious and important right- and protecting the right of both that patient and those around him or her from tragic and untoward effects of the patient's illness. The latter right has been overshadowed recently by our preoccupation with the former, but physicians and society must be equally concerned with both.
Since the Wisconsin law went into effect, a number of cases in which patients died with their rights on have been brought to my attention. I am in the process of collecting such cases from throughout the country so that they can be properly weighed by the psychiatric community in the always delicate task of balancing humane clinical and societal concerns against legal concerns in the commitment process.
My file is not complete yet, but consider these Wisconsin cases:
A 49-year-old woman with anorexia nervosa was admitted to a medical unit in a general hospital. Largely because of anxiety over a family struggle in which she was deeply enmeshed, she had steadfastly refused to eat and lost a great amount of weight. The woman, like many anorectic patients, presented a life-threatening- though not immediate- clinical picture. She was in good, general contact with reality and was not flagrantly psychotic. But she refused to voluntarily submit to any psychiatric help in spite of her family's concern and encouragement. In fact, she insisted on leaving the hospital although her condition was frail and deteriorating.
Her family and physician asked the court to permit psychiatric observation. But the judge felt that her condition was not dangerous in an immediate or imminent sense, and therefore, she failed to qualify for admission to a psychiatric hospital. She was allowed to go home as she has wanted.
She died of starvation three weeks later-with her rights on.
A 19-year-old coed, with a lingering schizoaffective depression of major proportions, attempted suicide by swallowing a massive overdose of prescribed and over-the-counter drugs. Only the unexpected arrival of friends, who found the girl unconscious and took her to a nearby emergency room, prevented successful suicide. After two days in intensive care, she regained consciousness and agreed to be transferred to the psychiatric ward in the same hospital.
"No Suicidal Intent"
Although only partially dissuaded from her wish to end her life, she voiced a feeling of well-being that was obviously superficial and insisted on being released in spite of her family's and her doctor's wishes that she remain for further treatment. The patient adamantly denied any suicidal intent and her family extracted a promise from her that she simply wouldn't try such a thing again. Her family considered commitment but was advised by lawyers that, in view of the girl's generally positive presentation of herself, she did not qualify for commitment under the new guidelines. Her situation lacked the element of "extreme likelihood of immediate harm to herself or others." The girl signed out of the hospital against medical advice.
The following day, she hanged herself. But like the others she died with her rights inviolably observed.
No doubt for every one of these cases there does exist a little old immigrant who, though perfectly sane, has been institutionalized for years because his broken, unintelligible English was mistaken for psychotic ramblings. Or somewhere an elderly woman, labeled retarded in 1920 and shuffled to a forgotten ward, may be found by an inquisitive graduate student wandering the back wards to be, in fact, a genius. Or an eccentric who once delighted in storing pancakes will be turned up years later, after having been committed at a time when storing pancakes was unfashionable.
My intent is not to minimize the grievous harm done in such situations. In fact, the discovery of such cases has rightfully heightened our vigilance and concern that the commitment process should not be arbitrary, abused, or perfunctory. Yet we seem overly zealous with regard to the hazards of commitment. A public epidemic of "unicorn-in-the-garden" fear is sweeping society and the courts. I take the name of the epidemic from the late James Thurber's tongue-in-cheek tale of a woman who tries to have her husband committed after he speaks of feeding a lily to a unicorn in their garden. But when she informs authorities, they take her away instead.
Indeed, many fear that the sane rather than the sick will somehow be hospitalized without stricter laws and that commitment to the psychiatric hospital (white coats, nets, and all) will be used as a subterfuge for unsavory, convenient motives, be they personal, societal, or political.
The attention and empathy of the public and press lately have been focused on this problem-that of keeping the sane or eccentric from mistaken commitment. But how do we console the grief-shattered mother in California who, appearing before a state legislative committee looking into the commitment turmoil there, told of actually seeing her mentally ill son kill his wife, children, and himself after he was refused- by law- necessary continued hospitalization.
Those poor people died, it seems to me, with his rights on. But what about their rights to be spared the tragic outcome of his illness?
The California mother charitably acknowledged that those who changed the commitment law (unwittingly making the tragedy possible) were well-intentioned and "humanely inspired." Yet she argued, as I do, that however necessary, important, and noble the effort to protect the civil rights of patients, we must guard the rights of those close to the mentally ill just as carefully. For suicide and homicide are not the only untoward consequences of the new laws; morbidity also occurs in the form of unnecessary suffering for the patient and his family.
Some patients become increasingly disturbed and develop a poorer diagnosis as time passes until they finally accumulate the proper mix of symptoms to meet the law's dubious qualifications of "dangerous".
And sometimes the family of a psychotic mother may literally disintegrate while vainly trying to construct some form of routine family life around mother's bizarre and often psychologically destructive symptoms. Or the wife of a mentally ill man may finally abandon her struggle to keep the family going, wearied by fruitless attempts to patch together a normal marriage. Such morbidity is doubly tragic since early intervention could lessen or even prevent destructive consequences.
Stifling Paternalism
There is another matter that should be considered in redefining qualifications for commitment. It is the abrupt reversal of social policymakers from an attitude of stifling paternalism toward the mentally ill to the outright abandonment of their needs. From Canada, England, and the United States come reports of a dependent patients into a relatively unreceptive society with which they are ill-equipped to cope.
This effort, also humanely inspired, has been carried to a grim extreme by politicians who are interested not in the mental health system, but in the economics of that system. The mass exodus has been chiefly an effort to solve fiscal problems, not the patients' human problems.
In New York, Suffolk County reports that 5,000 former mental patients are on the welfare rolls and have no family, no job, and no place in the community.
Balancing the complex equation of which of the mentally ill must be hospitalized is a difficult task at best and a treacherous one at worst. Somehow, however, all the elements of that question need be given their proper weighting. These elements include not just the right to be free or the right to be sick, but also the right to be rescued; the right of the family and society to be free of the serious untoward effects of such an illness; the right of the patient to due process; and the right of the patient to dignity as a human being.
Man has never moved by plan. He has always moved by crisis. The pendulum has been the vehicle. A swing forward and a swing backward. Having reached the upward limit of too liberally defining illness and commitment, the pendulum now threatens to reach the other extreme. We are struggling now to come to some reasonable middle ground between the right to be ill and the right to be rescued, just as we struggle in criminal law to balance the criminal's rights with the rights of the victim.
The Pendulum of History
But the pendulum of history is a peculiar instrument. Like all pendulums, it swings to and fro. But somehow, almost imperceptibly, its forward excursions have always slightly exceeded the backward ones, and thus we as a people have managed to awkwardly inch forward. But we've moved backward recently, toward once again criminalizing the mentally ill, taking a stance I thought we had abandoned a century ago. In Wisconsin, for example, in an obviously adversary proceeding one can be found "guilty" of being mentally ill, for mental illness is defined only in terms of dangerousness. Family members testify "against" each other, and what should be a private predicament becomes a public record.
Perhaps the next time the pendulum swings forward it will propel us, gently, further than we ever have before, so that we will reach a more sophisticated point of balance. It will be too late for Angela, Rene, the California mother, and the several others I have briefly cited here. But I hope that their predicament will at least aid us in soon finding that humane balance point that will mean a more humane attitude toward the mentally ill.
