There are many family members who struggle with trying to manage a love one with mental illness. I have watched this heartbreaking problem over the last four decades and finally we have a solution that applies some teeth to the issue. It is called Assisted Out Patient treatment and it is a court monitored program of the severely mentally ill who meet certain criteria. One such criterion is that the person must have been hospitalized at least several times over a certain span of time. This program has become law in almost all states but there are a few holdouts. My own state of New Mexico has been slow getting on the bandwagon and to date, we only have one city participating in AOT. AOT is a result of Kendra’s Law in which a young woman was pushed in front of a train in 1999 by an untreated schizophrenic in New York.
First, it is important to address the issue of medication nonadherence, sometimes called noncompliance. It is due to a psychiatric phenomenon called “anosognosia” whereby an afflicted person lacks the insight to realize that they have serious mental disorder. Due to this process, it is common for people with schizophrenia and bipolar disorder to stop taking their medication. While the act itself of stopping the medication is willful, the insight to make a logical decision is absent; therefore, there is no blame assigned to these disordered individuals. They simply don’t see the need for it and often blame their resistance on side effects. While side effects are certainly a valid issue, we prescribers use every available strategy to minimize such events. Stopping the medication results in a decompensation into psychosis, characterized by hallucinations, delusions or mental disorganization, such that the afflicted person often becomes a danger to self or others in the community.
I am clearly a proponent of this new federal program simply because I have witnessed the desperation of family members far too often. Family members often are in fear for their lives in the middle of the night and commonly have to put away all sharp and potentially dangerous objects in the household. They struggle to help their loved one as best as they can, locking up medication and administering it, volunteering to be a court appointed treatment guardian and learning all they can about the illness from organizations like NAMI (National Association for the Mentally Ill.) However they can’t do this alone and need as much community support as they can get from prescribers, therapists, community support workers and psychosocial rehabilitation staff. They also need the court system and I can verify that patients often listen more closely to judges than their doctors.
I have served as an expert witness in many competency hearings for both adults and children and when I was teaching, I would regularly take my students to the courtroom to observe the proceedings. I have personally witnessed patients with schizophrenia on an inpatient unit mumble to themselves in the morning, responding to the voices in their heads, and several hours later, answer questions appropriately by a judge. The patient is represented by an attorney usually with a degree of expertise in the mental health field and the physician/provider is there to represent the state. While most physicians/providers put forth a logical and convincing argument for treatment, the judge is paying close attention to the behavior of the defendant. If he or she is able to convince the judge that they are of sound mind and judgment, he or she will be discharged and free to discontinue their medication without further monitoring. Down the road, the cycle begins again when the person decompensates and is either hospitalized or incarcerated. Sometimes they are deemed competent because they are responding well to the current treatment; sometimes they are able to put forth their own convincing argument because they have learned what buzz words to use in front of the judge.
I have recently experienced this phenomenon myself. After having worked very hard to persuade three of my schizophrenic patients to take the long acting antipsychotic injectable medication that eliminates oral medications, all three decided to discontinue after having shown noticeable improvements in mood, behavior and functioning. Since there is no AOT program in this community, the family and I stood helplessly by and watched the inevitable process of decompensation begin. This is a tragic and unnecessary cycle that should be stopped.
While opponents to this program cite violation of civil liberties, statistics have shown that due to the effectiveness of AOT, the capacity of the mentally ill to exercise civil liberties is restored and there is a reduction of incarceration, hospitalization, suicide, homelessness and victimization. (www.treatmentadvocacycenter.org/component/content/article/1336).
If you are facing this devastating challenge in your own family, find out if AOT has been instituted in your state. If not, write to your representatives and ask why not. The internet address above is a great source of information on the topic. Inform yourself, then get involved and make your voice heard. No one can speak to this issue as well as a family member.