When my friend Kurt, who was 26, died in April after colliding with another car, he left a cloud of confusion in his wake. Kurt had struggled with schizoaffective disorder, a subtype of schizophrenia, since he was a teenager and many of us wondered whether Kurt's tragic death was a suicide. Police said many drivers that night reported him driving erratically and speeding before his crash. I knew that more than 10 percent of people with schizophrenia commit suicide. But I also thought I knew that Kurt would never try to hurt other people, and his head-on crash sent the passengers in the other car to the hospital. Luckily, they all survived.
While we may never know whether Kurt decided to end his life or was merely driving recklessly, his history of medication noncompliance certainly makes a case for making involuntary treatment more widespread and easier to order. A recent article in the New York Times Magazine by Jeneen Interlandi discusses the debate over involuntary treatment by highlighting her father's struggles with bipolar disorder. She wishes that someone could have forced him to seek treatment to expedite his recovery. Also, she discusses a few cases where people with severe mental illnesses like schizophrenia have been violent toward others, and notes that many states are pushing for more leverage for psychiatrists and mental health facilities to involuntary commit patients deemed to be a danger to others. Interlandi correctly states that people with schizophrenia and other severe mental illnesses are more likely to be a danger to themselves or end up victimized by others or homeless than they are likely to be violent. Her reporting documents the groundswell to counter the move from the 70s and 80s that made it more difficult to involuntarily hospitalize people.
Aside from the right of the state to protect others from danger, there is a legal justification called the principle of parens patriae, which is the right of the state to act as the parent of a disabled person. It is this right that would have been most appropriate in helping Kurt get treatment for most of his life, as he was never a danger to others except in his last day on Earth. Indeed, there were brief spells when his psychiatrist authorized non-emergency involuntary administration of psychotropic medication for Kurt, which is part of the Mental Health and Developmental Disabilities Code in Illinois. He would have to go to his psychiatrist once a month to receive a shot of Haldol, a powerful, older-generation antipsychotic, the effects of which Kurt didn't like. By the time of his crash, Kurt was trusted to administer his medicine by himself, but his mom told me that he was refusing to take it. I never knew this.
In addition to the hallucinations and delusions most people with schizophrenia face (Kurt only had delusions), they also suffer from anosognosia, or an impaired awareness of their own illness. Kurt would often say that people "told him" he had schizoaffective disorder, but he wasn't so sure about that label. He did often recognize and lament his delusions. "Life would be pretty good if it weren't for these delusions," he would often say. His refusal to take his medicine reflects his lack of awareness of the illness and what can effectively treat it. The phenomenon of anosognosia provides a good basis for arguing that people with schizophrenia are not as aware of their treatment options as someone with an equally serious illness like cancer. And this suggests that their states of mind are not always clear enough to make decisions.
Health care workers and mental health professionals have a range of options for helping those who might not be able to make these decisions themselves. Authorized involuntary treatment ranges from hospitalization to forcible medication. Laws vary by state, but usually professionals must use the court system to issue an order for treatment, and these orders vary depending on whether the treatment is an emergency or a non-emergency situation.
The objection to involuntary treatment is that it deprives patients of their autonomy and their right to make decisions that impact their health. Elyn Saks, a MacArthur "genius" grant recipient and a law professor at USC, argues that involuntary treatment is inhumane. She suffers from schizophrenia and was involuntarily committed in college. After wavering on medication for many years, she eventually began taking her medicine and has since stabilized considerably.
In her writing on involuntary treatment, Saks notes that forcible medication costs much less than civil commitment. While she wouldn't agree with me, expanding this practice and streamlining the legal process involved is the best place to start in reversing current trends that so often let people with serious illness drift along in life without help, sometimes losing years of happiness and productivity. The lower cost could entice state leaders who are wary about budget deficits. In pure fiscal terms, untreated mental illness is estimated to cost more than $100 billion per year. And it drains state coffers of revenue too. According to a 2008 Time magazine article, mental illness results in $193.2 billion in lost earnings per year.
Beyond dollars and cents, there is a profound and deeply urgent need to expand treatment to those in grave danger. Only half of all people with schizophrenia or other serious mental illnesses seek treatment in a given year. When people analyze the Supreme Court's recent ruling that the government can force people to buy health care or face a tax, mostly they discuss the mandate in fiscal terms. But there is a moral argument to be made as well, that health care is a right as much as the freedom to make one's own choices. Letting sick people go without care is immoral, and letting them suffer is unkind. Similarly, forcing those with the most severe and mind-muddling illnesses to take medication should be made as a moral argument. People with schizophrenia who have recovered -- and medication is the most effective treatment -- are glad they relented to their doctors' constant pleas to take their meds. I should know. Though I have been diagnosed with bipolar disorder and schizoaffective disorder by different psychiatrists, I think I most likely have schizoaffective disorder. Like my best friend Kurt, I too equivocated on taking my medicine, which resulted in two years lost to intense delusions and hallucinations. I am glad I am finally committed to my medicine. To me, it doesn't matter that I finally came to this decision on my own; what matters is that I'm now taking the medicine and can live my life with sweet reason. I wish I could have convinced Kurt to do the same.
I don't truck with arguments that our systems (justice, mental health, police) couldn't handle forcible medications. Certainly the systems don't do enough to coordinate care right now and do not always see patients as equals, but they can. People with schizophrenia make up only 1 percent of the population, so our care systems could accommodate the most severe patients who need help. And the systems are in some respects stunningly meticulous, even Kafkaesque. A few weeks after Kurt's death, while his family was still grieving, his mom received a letter in the mail from the police that contained tickets for Kurt for speeding before his accident. She had to pay them.
It was a horribly tactless thing to do. But it proved to me that our institutions can be extremely efficient, and can use that efficiency for good when they are calibrated to consider the patient's well-being. Countless mental health professionals care deeply about their patients and want them to get better. Strengthening involuntary treatment will allow them to do that.
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