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Personal Accounts: Schizophrenia: A Terminal Disease?
Anastasia Byler
Psychiatric Services 2008; doi: 10.1176/appi.ps.59.10.1105
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The author resides in Vancouver, British Columbia, and is conducting research toward her doctoral degree in industrial-organizational psychology. She is a freelance editor of manuscripts for psychology scholars in Europe and is a wife and mother of two boys. She can be reached via e-mail at abyler@psychedit.com. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.

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Consider the following account of my brother's death, which appeared in the San Francisco Chronicle on October 16, 2007, under the headline "Man Crushed by Muni Bus Committed Suicide, Police Believe":

"San Francisco police believe that a man killed by a Municipal Railway bus Sunday committed suicide. … Relatives of 30-year-old Zachary Sebring of San Francisco told police he had a history of mental illness and had once tried to throw himself under a Muni bus. Witnesses told police that Sebring sat down next to a bus stopped at the corner of Eddy and Hyde streets. … Sebring "extended himself forward," as if to get under the bus, then … tried to move away from the vehicle. … Just then, the light changed and the bus pulled forward, catching Sebring under the back part of the vehicle. Sebring was pronounced dead at the scene. Police and Muni officials said they have not been able to determine which bus hit Sebring because no driver or passengers reported any incidents."

Zach's story is one of an estimated 5,000 similar stories per year (according to the Center for Psychiatric Rehabilitation) about people with severe mental illness who, neglected by outpatient treatment practices in the United States, commit suicide.

Zach's life began well enough. He was a vibrant, energetic, curious, happy, loving, and compassionate human being. His personality was so wonderful, he was gentle and funny, and he loved to make people laugh or engage in conversation about the state of the world. He was never aggressive or violent, and he never had anything bad to say about anyone. During his young life, he had many interests that he followed passionately, such as chess, hiking, bird watching, and star gazing. He was thoughtful and intelligent. He loved math and physics and worked as a tutor in these subjects to community college students in his home town. Zach was also talented and disciplined in music and taught himself to play guitar; his favorite music to play was jazz. In addition, Zach loved participating in sports such as basketball, football, tennis, weight lifting, karate, skateboarding, bike riding, and bodysurfing.

Although he seems to have developed well in young adulthood, he had to overcome many hardships in his young life, including abandonment by his father and a mother who struggled with posttraumatic stress disorder and was unable to work for many years. Through all of that, Zach was able to maintain an A-level grade-point average and graduated with honors from Escondido High School in 1996. He was offered a scholarship to attend the Revelle College at University of California, San Diego, and studied there for three years.

Around his second year in college, Zach started showing signs of mental illness. He refused treatment time and again, and over the course of the next nine years, his condition became more noticeable and less controllable, both for him and for his family. His conversation style became erratic and emphatic; his train of thought was circular, with tangential loops and twists here and there, and he would talk for hours without stopping, making it impossible for us to follow. He started fixating on minor injustices and would spend hours on end, for months at a time, at the law library, searching out laws and building cases over such petty things as being charged three dollars more for a meal he thought should have been within the time limit of the lunch-hour menu but in fact was during dinner hours.

As his sister, and as someone holding a degree in psychology, I had recognized a need for my brother to seek professional help. I could only speculate as to what was happening with him, guessing it was attention-deficit hyperactivity disorder, obsessive-compulsive disorder, or even early signs of bipolar disorder. Not being one able to diagnose professionally, I urged my brother to see someone who could assess his condition and start him down a path to recovery. However, as part of his illness, he failed to recognize that he was ill (anosognosia). Also, he was paranoid and defensive and was always threatening lawsuits toward anyone who was "violating his civil rights." These two things made it impossible for us as his family to do anything for him within the social and legal structure of the United States. And so his condition deteriorated and led to several incarcerations and illicit drug use. His incarcerations fed into his paranoia, and the drug use further exacerbated his mental state.

Zach left for San Francisco in 2006, hoping to track down House Speaker Nancy Pelosi and "plead his case." He made it as far as a small court in San Francisco but was laughed at and discouraged. He spent the first several months in San Francisco in a shelter, unable to afford rent and to hold a job because of a physical disability relating to an on-the-job injury, for which he was receiving about $680 a month in Supplemental Security Income. Later he moved into a hotel while on a waiting list for subsidized housing.

We received a call from a case worker earlier in the spring of 2007, saying that Zach had attempted suicide by trying to jump from the Golden Gate Bridge. Then again, in July 2007, we received a phone call from his case worker, who said that Zach had thrown himself in front of a bus in another attempted suicide, that he was being hospitalized at San Francisco General Hospital for 14 days for evaluation, and that finally he was being given antipsychotic drugs for schizophrenia.

We were relieved that Zach was finally getting help, but that relief quickly turned to desperation. While he was in the hospital he told his case worker, his physicians, and me that he had gotten a clear view from under the bus and that next time he knew where to place his head. He also said that he did not want to die, he was not unhappy, and that he thought that this attempt would not result in his dying. He was paranoid and felt threatened by things his mind conceived. He thought he was being followed by men from Home Depot in white vans who wanted to cut off his fingers and toes. He said that the incident with the bus was his way of tricking these men into leaving him alone and that he was planning to do it again. He told all of this to me just two days before his release. My mother and I begged that he be hospitalized for a longer period or be placed in a residential treatment program, at least until his condition had stabilized and we could better intervene in his direct care. We were told that, unfortunately, the laws in California are set up so that only 14 days of hospitalization is allowed if the patient agrees to be compliant within Assisted Outpatient Treatment (AOT) regulations. Since he was "compliant" with these regulations, he was released from the hospital even though his psychosis had not stabilized and he was still suicidal.

Tragically, on Sunday, October 14, 2007, at approximately 10:45 a.m., Zach had the opportunity to try again, and this time he was successful. We were never given a fair chance to try to save him.

When statistics such as those from the Center for Psychiatric Rehabilitation show that one of every four persons with schizophrenia makes a full recovery within ten years of treatment, I become dispirited that we were unable to get help for my brother in time. My question is this: How can a person who is still having psychotic episodes make a rational decision to comply with an AOT program? The decision to release him was fiscally, not morally, based. He should have been held longer for his health and his safety.

The laws that intersect with this area of medicine are antiquated and need to be updated, with consideration of all that has been learned about this disease in the past 30 years. Under current legal statutes, permissible involuntary treatment of mental illness can be likened to treatment of a person with cancer or any other severe disease who is hospitalized and merely given aspirin and observed for 14 days, then dismissed from the hospital while still gravely ill and told to take care of him- or herself. Because laws are structured to prevent treatment for those who need it most, my brother's diagnosis was his death sentence. I was restricted in what I could do legally to fight for my brother's health while he was alive. Now that he is gone, I will continue to fight for him and for the thousands of others who slip through the cracks each year.

I would like to change things so that families are allowed to intervene at the point when their loved ones are involuntarily hospitalized instead of being cut out of the equation. If the states, at that point, are already taking away patients' rights, then why not let the families get involved with their direct care as well? Let families who are willing do what they can, and in so doing, become educated and better able to directly care for their family member in the future.Ultimately, this would ease the burden on thestate. I would also like for those with severe mental illnesses to be allowed longer hospitalizations, to have time to find the medications that work for them, and to have time for those medications to take effect before being released. Schizophrenia and other severe mental disorders do not have to be terminal diseases.

I speak for my whole family, and a host of friends, when I say that Zach was loved, he was desired, he was a large part of our lives, and he will forever be missed.

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