The Dangerous Movement to Stop Treating the Mentally Ill
Those who suffer from severe delusions desperately need help—especially if they don’t know it.
“Doctors Gave Her Antipsychotics. She Decided to Live with Her Voices.” This is the title of a piece by Daniel Bergner that appeared last week in The New York Times Magazine. It focuses on a woman who has heard voices since she was in day care, went through periods of treatment with drugs that had debilitating side effects, and decided to drop them and try another approach. While Bergner’s piece is about Caroline Mazel-Carlton, she is the fulcrum for a full-scale assault on modern psychiatry and its failures, and an appeal to do away with court-ordered care and let people who have delusions or hear voices find their own path.
Bergner’s piece, adapted from a book, is long, detailed, and sensitive, with heartening stories of people overcoming adversity. But it made me wince. First, while some people suffering from schizophrenia hear voices that are less cacophonous, or soft enough that they can be tolerated, others experience angry and threatening voices, leaving them in agony and completely unable to find a path on their own.
Second, and most important, the piece is dismissive of the idea that mental illness is in fact a brain disease, and there is only one passing reference to phenomenon of anosognosia, an ungainly word that reflects a key reality about severe mental illness (SMI). Anosognosia means that those affected have no insight into their illness. It is a symptom and component of some brain diseases that have adversely impacted the frontal lobe of a person’s brain. Untreated, individuals with anosognosia end up homeless, jailed, or dead. Not by choice. The most comprehensive study showed that 57 percent of those with schizophrenia are either moderately or fully unaware of their illness, with 32 percent completely lacking insight. In a broken mental health system that bars family and friends from meaningfully intervening in the care of a loved one suffering from anosognosia and gripped by delusions, those loved ones are involuntarily deprived of treatment, often with dire consequences, and without them having the ability to understand their own need for potentially life-saving intervention.
It is true that drugs do not always work and often have bad side effects. A lot of drugs that are available are, as Bergner says, poorly understood in their interactions with brain and body, and can require weeks to take effect and often months to tinker with, in order to calibrate the optimal mix of meds and dosages—and even when they work, they can have deeply debilitating side effects. And he is right that the newer generation of antipsychotics appear generally to be no more effective than the older ones.
But for many, drugs remain a critical component of recovery and a healthy life. We know that clozapine, one of the oldest medications, can have a dramatic positive impact for many people with serious mental illness, and that long-acting injectables significantly reduce the problem of non-compliance. Moreover, there is a third generation of drugs in the pipeline, not yet through clinical trials, that uses different pathways to the brain, and may well work better with fewer side effects. Beside medications, cognitive behavioral therapy is often effective. Wraparound services—therapy, peer support, housing—can make a huge difference. To ignore anosognosia while suggesting that it may be a good idea to shun existing medications, consigns wonderful people to a living Hell.
My son Matthew, a brilliant and accomplished young man, a national champion high school debater and graduate of Princeton, was doing well in a career in Hollywood when he had a psychotic break at age 24. Matthew believed God was testing him and was holding his soul for ransom while deciding what to do with his body. This unshakeable belief was real to him, not a delusion. He was certain he was not ill, but bewildered at what he had done to anger God, desperate to find a path to redemption and convinced that medications would take him off that path.
For ten years, despite the fact that he was a threat to no one and devoted himself to helping others in order to get back in God’s good graces, he lived a dreadful existence. He was pushed out of places he was living because he had long hair and a beard and kept odd hours, and because, like so many with serious mental illness, he smoked heavily, adding an additional layer of stigma to that which is endemic in our society for those with mental illnesses. He died alone in a motel room in Delaware in January 2015.
Over the course of our tragic journey, our desperate, devoted and close-knit family found that in our broken mental health system we were powerless to save our son, often unable, because of HIPAA (and the misapplication of HIPAA), to find out anything about his condition or his whereabouts. He was over 18 and had autonomy. We tried over and over to reason with him, to get his life stabilized, to find ways to give him the help he so desperately needed. But because of his anosognosia, he resisted and became frustrated and angry with us. This is a common experience. We have now seen and talked to hundreds of families who have had similar ordeals.
Our best guidance came from a book aptly named “I’m Not Sick, I Don’t Need Help,” by psychologist Xavier Amador, the world’s leading expert on anosognosia. Dr. Amador met with us and helped us change the way we talked to Matthew, which at least made our relationship less fraught for a while. After Matthew’s death, we created a foundation in his memory, and one of our initiatives is to work with Dr. Amador and his incredible team on a series of programs to train family members and professionals in his technique for communicating, and ultimately seeking partnership, with those who have no insight—a partnership that does not require the ill person to admit what they do not believe to be true. Along the way, we have heard story after story parallel to ours.
I do not know if it would have altered his course if we had been able to get Matthew treated, whether by his own agreement or through a court-ordered program, whether in an inpatient behavioral health center—had there been one with available beds—or, more likely, via assisted outpatient treatment (AOT.) What I do know is that for large numbers of those with serious mental illnesses, AOT has had remarkable results, enabling people to recapture their lives. AOT does not work when it consists solely of someone dropping by once every two months to provide an injection, or even once a week to dispense meds. It requires comprehensive and wraparound services, with a social worker, medical professional, and ideally a peer counselor.
In Miami-Dade County, Florida, a remarkable judge named Steve Leifman has developed just such a program. Those with mental illnesses charged with misdemeanors or non-violent felonies can avoid trial and have their records expunged by successfully completing a diversion program through which they are given housing and the needed comprehensive services—and the results have been stunning. (See Dr. Leifman and his team in action in the documentary we spearheaded, which we hope will serve as a template for others: “The Definition of Insanity.”)
Of course, there should be safeguards to prevent going back to the cruel and coercive past, and to guard against abuses. We need better standards to determine when people are truly incapable of understanding that they have serious brain diseases. We obviously need dramatic reform of our mental health system, along with changes in the criminal justice system and the way the police deal with confrontations.
But no one really chooses to freeze to death under a bridge, to rot in solitary confinement in prison, or to die by suicide or an accident triggered by their illness. My wife Judy Harris often says, “Our son died with all his civil liberties intact.” We can strike a better balance—one that can reduce the number of tragedies so many of us and our loved ones have suffered.
Norman Ornstein, a member of the Persuasion advisory board, is a resident scholar at the American Enterprise Institute and a contributing editor for The Atlantic.
Editor’s note: This piece has been updated to reflect that the New York Times Magazine article cited contained a reference to the phenomenon of anosognosia.