One of the most difficult obstacles to successfully treating schizophrenia is the person’s lack of insight (called anosognosia). It is beyond denial. A person genuinely believes that nothing is wrong with their mind. It is similar to a person who has just had a stroke believing he is not paralyzed in one of his legs, when actually he cannot move properly, let alone walk again.
For those who continually refuse medication and are too ill with psychosis to have insight, I think one of the best programs available in the United States is Assisted Outpatient Treatment (AOT).
My Experience
When people look at me today, I think they see someone who is confident and successful. Running a nonprofit foundation that supports families struggling to support a loved one’s schizophrenia is my occupation. My organization also educates the general public that schizophrenia is a physical illness of the brain that can be treated effectively with modern medicine, and there should be no hesitation to ask for help. I dress like a business professional. I enjoy frequenting coffee shops. My apartment, a block from the University of Cincinnati, is my refuge, and I enjoy inviting friends over for homemade French toast or a salad.
Perhaps the fulfilling and healthy life I live today is nothing short of a miracle.
My life was hopeless prior to my full recovery from schizophrenia, thanks to an underutilized antipsychotic medication called clozapine. I had dropped out of college and was scrounging around for food from garbage cans on my former university campus, too sick to maintain employment. I pretended to be a student when I was not anymore. I slept in campus libraries and lounges, until I was picked up by police for doing so. Refusing help from family and friends, I was homeless for four years, spending the last 13 months living in a Los Angeles churchyard, outside.
During my first hospital stay, I remember being told I had to take antipsychotic medication. But I fought hard against it. I thought all antipsychotics were sedatives that would make me blankly stare into space. I did not know that the right medication could be the key to a new life filled with school, meaningful work and relationships.
Relapse
Like most people, following my hospital discharge, I discontinued my antipsychotic pills. And like most people, this led to a devastating relapse. But the psychiatrist who treated me during my second hospital stay successfully convinced me to always stay on antipsychotic medication. He explained that school and work might be possible, but only if I always adhered to medicine. He also explained that if I discontinued the medication and decided to start taking it again, it could be permanently less effective, even at higher dosages. I learned that this is what leads to disability.
After my second hospital stay, I complied with medication and looked for a brighter future. My doctor was right. On medication, I eventually graduated from college, began working, and regained a life filled with family and many friends.
But today, even after all I have been through, I understand that I was one of the lucky ones.
Because medications often have side effects, and also due to the stigma of taking schizophrenia medications, people with schizophrenia, and especially those struggling with anosognosia, often refuse medication and/or treatment. Sometimes, there are multiple hospital stays, but the person who is sick lacks the insight to realize that a commitment to faithfully taking the pills can keep them out of the hospital. They do not understand that taking medicine would enable them to live with stability in the community.
Why Assisted Outpatient Treatment?
Assisted Outpatient Treatment (AOT) provides community-based behavioral health services that are under a court order for people with serious mental illness who are unable to adhere to treatment. AOT treatment is involuntary, but the idea is that families and their clinicians prefer involuntary treatment in the community over involuntary commitment in more restrictive settings such as hospitals, which is inevitable for many who stop their meds (though AOT can initially be used in conjunction with involuntary treatment). It is better for persons with severe mental illness not to wait to spiral downward until they deteriorate to the point of becoming involuntarily committed in a restrictive setting such as a psychiatric hospital.
Persons on AOT commonly have difficulty living safely in the community without being monitored closely. Under AOT orders, participants usually meet periodically with a magistrate or judge who asks them questions about whether they are still symptomatic, if they are taking their medication every day, where they are living, and other questions about goals, such as if they want to return to college or search for a job.
Psychosis Essential Reads
For most patients, one year of AOT can provide the stabilization that is needed to stay on their medication and live independently. The hope is that, after a year of AOT, persons will be living in a stable situation and can move forward toward their goals of work, school, and/or volunteering. And, of course, as people leave the program, the highest hope is that they will continue to always take their antipsychotic medication, which is the foundation of success and stability.
AOT today is available in 48 states but not in Massachusetts. Several professionals are fighting hard to see AOT adopted in Massachusetts. This includes Ann Corcoran, MSN, from the National Shattering Silence Coalition.
AOT is not just about bringing a person struggling with schizophrenia a higher quality of life. It can also prevent homelessness, suicide, and crime, such as petty theft or loitering, as petty crimes are common among those who cannot think clearly.
Thoughtfully implemented AOT can help save money in the long term. In-patient hospitalization costs, which are usually prevented through AOT, can amount to over $1,500 a day. It is also common for psychosis to lead to bizarre or aggressive behavior, which can lead to an expensive and humiliating incarceration. Keeping persons out of jail not only saves money, but it is best for everyone.