The Good, the Bad, and the Legally Ugly: my state’s view of schizophrenia

At 9 am, my son was a good schizophrenic. At 10 am, he was a bad schizophrenic. That’s when I began to learn just how ugly Pennsylvania’s laws governing schizophrenia are, but it took me much longer than an hour to understand why my state wants them to be ugly.

During that hour on February 19, 2013, my son Levi heard an angel’s voice telling him it was time to kill someone, immediately. He had been hearing that voice for several years and knew it well: it was the archangel Michael. Amateur artists on the internet had shown him many depictions of Michael, so he knew that it couldn’t be just his imagination. Michael’s hallmark was his sword, always held up for ready use. The internet even provided articles on how to tell if you were actually hearing Michael’s voice, and they emphasized its commanding presence and the peace you’d feel from knowing that the command was right.

Levi didn’t feel entirely at peace about Michael’s command to kill his own grandmother, but Michael and others had been telling him for a year that the entity in his grandmother’s body was actively evil. The previous June, he knew she had tried to stab him in his sleep — at least, he was pretty sure he knew that. He remembered it clearly, although his family kept insisting it hadn’t happened. They seemed blind to the presence of evil among them. Michael told him it was up to him to take care of it, and now. The evil had to stop.

Up until the moment when Levi sent a knife through his grandmother’s (my mother’s) back, he was a good schizophrenic patient. He had full civil rights, most definitely including the right to refuse treatment for his illness. We all recognize that right: if you are terminally ill and choose to stop treatment that is only causing you painful side effects and can’t save your life, you may do so. If you are a normal adult with a headache, nobody can force you to take a pain reliever if you’d rather tough it out. If you have Diabetes II and won’t follow your prescribed diet, you are not breaking any laws. We wouldn’t want it any other way.

But when that principle is applied to brain diseases that influence thoughts, there’s a major problem. The right to refuse treatment assumes you can make informed decisions; it also assumes that nobody but yourself will be harmed if you refuse. This is mostly true in normal dilemmas like diabetes or end-of-life care. But neither assumption is correct when the disease is schizophrenia, a degenerative brain illness that causes false memories and can even create an imitation of real sounds and sights.

Schizophrenia has a further twist: the most common form of the disease also causes an overwhelming sense of being surrounded by evil and harm. Paranoia and delusional thoughts combine to produce narratives of imminent danger and fear: “my mother is carrying an alien baby who will destroy the world,” or “my father isn’t really my father, he’s an impostor who is trying to kill me.” Or, for example, “my grandmother has become evil and is poisoning my mother.” Someone with these beliefs may not hurt anyone, but if he does, the potential for terrible harm and tragedy includes many others, as well as himself.

People who live inside such realities don’t want to take medicine for various reasons. First, the pills or shots are irrelevant to their mission of guarding against danger; in fact, medicine might dull the person’s sense of danger, causing them to drop their guard. People without schizophrenia call this “getting better,” but for someone with an actively delusional worldview, it means being turned into an easy, unwary victim. They want to keep their awareness of the danger.

Second, the pills may be part of the danger. The alien baby or impostor wants you to take them, and anyone who’s watched movies knows that this means the pills will harm you. How many times have you seen someone slipped a pill or given a shot against his will in a film? I always close my eyes, but I know the scene: the shot-giver or pill-slipper is always a secret agent who’s drugging the hero or assassinating a helper. People with schizophrenia saw those movies, too; naturally, they don’t want to fall prey to assassination or kidnapping. They refuse the medicine.

Here’s where state law starts to sort good patients from bad ones. Bear in mind that good patients have rights, but bad ones don’t.

The good schizophrenic patient has delusions but breaks no laws. He doesn’t trespass, drive dangerously, or hurt anyone. If he thinks about hurting anyone, he tells someone. It can be a confession or a threat, as long as it’s forewarning. Once he has clearly communicated his plans, the state allows his family and doctors to make him take medication that will make his delusions fade or go away. If he goes to a hospital, he gets well in exactly 21 days, due to a 1960's-era federal law. If he didn’t already have services from society’s safety net, he can now get them: supported housing, some basic income, food stamps, free psychiatric appointments, and perhaps some kind of day program to attend. Those services are for the good people. They can remain on medication or go off it, as long as their up and down cycles stay within these prescribed bounds. “It’s not illegal to be delusional,” everyone says. (Good patients also have lobbyists in the state capitol protecting them from having any rights infringed, especially the right to refuse treatment.)

Bad schizophrenic patients look exactly like good ones, and their lives were identical up to a point, but they broke a law. Usually, this means that they did tell someone about their reality, but it was not deemed dangerous enough to act on. It was “not illegal to be delusional,” so nothing could be done. Then, suddenly, it turned out to be dangerous. In Levi’s case, this meant that after months of telling professionals and family that his grandmother intended to kill him and he might need to act in self-defense, on this day and at this time, he suddenly obeyed the angel’s voice and put an end to her life. It was the only act of violence he ever committed. Although he had previously wondered about how to stop his grandmother’s evil influence, he didn’t think he’d ever actually kill her. “If I saw blood and knew I’d caused it, it would break my heart,” he told me. He wasn’t angry, either. He just heard a new note of urgency in the angel’s voice and felt that he had no choice. In that moment, he flipped from good status to bad status.

Under state law, bad schizophrenics have a very rough time. They are arrested like any criminal; I frantically coached my son through his initial arrest so that he wouldn’t argue with the police or make any sudden movements to get shot. Bad schizophrenics very often get shot in this scenario; my son was okay, I think partly because the police felt they knew him. And from that point on, the formerly good patient learns that his rights have changed. Now, he’s a criminal. He can forget about internet articles proclaiming some new therapy for psychosis, and he won’t be in a day program or supported housing. Bad schizophrenics don’t get these things because they are just criminals. They get shackles, steel beds, poor food, and one clean shirt per week.

I know what you’re asking, because I’ve asked it, and I’ve heard it a hundred times: “But wasn’t Levi legally insane at the time he acted? Doesn’t Pennsylvania have an insanity defense? It does: it’s right here in a list on Wikipedia of states that provide an insanity defense. You have his delusions in writing, right? Didn’t all those doctors know? You can prove he was insane!”

Here’s the ugly part: Pennsylvania totally gets this, but it doesn’t matter.

After President Reagan was shot in 1981, there was widespread public outrage at John Hinckley’s verdict of Not Guilty by Reason of Insanity (NGRI). Nearly every state revised its insanity defense laws to make this plea either impossible or highly unlikely. The reason is that in the previous decade, a new Medicaid provision had caused many state psychiatric hospitals to close. Under this provision, Medicaid would not reimburse states for charges they submitted if the patient with severe mental illness was treated for more than 21 days in a hospital that took more than 16 psychiatric patients at a time. City hospitals could drop a few beds in their psych wings and stay within the magic number of 16, but state-owned dedicated psychiatric hospitals had few options. They could keep inpatient stays under 21 days, or they could do without federal Medicaid reimbursement. During the 1970s, most states closed most of their hospitals. The remaining ones operated under restrictions, especially the 21 day limit. Without the possibility of lifetime care, the insanity defense lost its context.

Most Americans believe that lifetime hospital care still exists for the chronically or severely ill, or at least for those who committed an act of violence while ill. It does exist in some states, but it’s so severely rationed that the number of patients in this care, compared to a state’s population, is statistically similar to zero. And that’s the really ugly truth about state law for the severely mentally ill: care is rationed through a series of gambles, allowing people with delusional illness to step out of the rationing line through either lucky success or unlucky failure.

Lucky success is uplifting; it means someone understands and manages his illness, with help. He isn’t dangerous, and he has friends. He lives alone or with others, and has lots of check-in appointments and visits to make sure he’s okay. Elyn Saks, a law professor in Los Angeles, has spoken out about her experience living with the disease of schizophrenia. She is married and works full-time in a rewarding career. Daily talk therapy appointments help her keep tabs on how her body is reacting to her medication, so that adjustments can be made with only rare inpatient stays. While most patients with schizophrenia can’t operate at the level of a university professor, many can work, create art, and have good relationships. We all love recovery stories, and it’s important to remember just how many of them there are.

But the unlucky failures aren’t people who are morally worse than the lucky successes. They are just people whose events played out differently. Their disease took a different turn, affecting different neural networks; or they didn’t say the right legal words, were in circumstances that eased the way into quick action, or were more isolated. In some cases like my son’s, it means they had the additional disability of autism to complicate things.

Care for the unlucky is simply prison. Legislators wrote the law with this goal in mind. Lifting a description of legal insanity from a Model Penal Code, they applied the phrases to a new definition of guilt: Guilty But Mentally Ill (GBMI). Many states have GBMI statutes; if yours does, then you can be sure that its designated, planned care system for the unlucky mentally ill is also the prison system. It won’t do any good to protest that “the mentally ill don’t belong in prison,” or to say that “we’re discriminating against a disease.” Your state believes that while the good mentally ill may not belong in prison, the bad mentally ill certainly do. You may imagine that defense is possible, but except in rare outlier cases, the court will just place the unlucky schizophrenia patient in lifetime prison.

The state knows that it’s saving money with this strategy. If you give a mouse a cookie, he’ll only ask for milk, right? If you alter the law to permit families to force more patients into involuntary care, you’ll have to increase inpatient capacity. That means rebuilding or remodeling the closed hospitals. If you do that, more families will try to get treatment, so the 1000 who were refused treatment this year will only grow to 10,000 next year, and now you have to give them treatment. If early treatment helps patients succeed at avoiding violence and tragedy, then they’ll need oversight and perhaps involuntary outpatient treatment. This means you’ll have to hire more psychiatrists, nurses, and other personnel to do the oversight. You’ll probably have to increase supported housing to allow the oversight to be more effective. If you rebuild some hospitals and set up assisted outpatient care, then prosecutors can’t tell juries that the only way to ensure treatment for the defendant is by sending him to prison. If juries start voting for NGRI outcomes more often, you may need to provide some with lifetime hospital care. Or you could just keep your GBMI law and allow the patients to sort themselves into the lucky good, the unlucky bad, and (often) the deceased. See?

Pennsylvania gave my mother only the choice of making her grandson homeless or risking her life. She chose to risk her life, and we all lost that gamble. State legislators prevented Levi’s family from making him take medicine to stop the dangerous delusions; they will now make him serve a 20 year prison sentence for believing those delusions. That’s just ugly.