Ask Virginia State Senator Creigh Deeds about his son Austin. He'll tell you of a "beautiful child" who was "full of love." Yet Austin (Gus), age 24, stabbed his father multiple times before taking his own life. "Whatever illness took him was so contrary to his nature," Deeds told CNN.
Onset of serious mental illness in late teens and early twenties is very common and often shocking to the families that experience it. The medical community knows this; researchers know this; millions of families know this and yet we wait for the topic to find its time while millions try to cope. Surely we can do better.
Over 13.5 million adults in the United States suffer from serious mental illnesses, such as schizophrenia, major depression and bi-polar disorder. Approximately 20% of American youth between 13 and 18 years of age experience severe mental illness in a given year, 2.6 million people live with schizophrenia and 6.1 million with bi-polar disorder. The problem is worldwide. Then there are the families who often suffer in silence under a heavy cloud of stigma and fear.
Recent research indicates the rate of medication noncompliance for serious mental illness is upwards of 74 percent soon after initiation, especially among patients with schizophrenia. University of Pennsylvania research indicates that if schizophrenia patients prematurely discontinue the first prescription of antipsychotic medication, then the chances are reduced of them sticking to a medication regimen later.
Of course, many people take medication as prescribed and do well. These are not the patients Xavior Amador, Ph.D., writes about in I Am Not Sick. I Don't Need Help. Amador describes a neurological condition called anosognosia that prevents many patients with serious mental illness from believing they are ill. He argues that it is not stubbornness or denial in the more common sense that keeps these patients from taking medication. In their heart of hearts, they believe that they are not ill. Rejection of illness is essentially a symptom of their illness.
It would be immoral to allow someone in insulin shock to go untreated. Why is it that we insist on letting people who are so sick that they don't know they're sick go untreated? Yet that is what we do in civilized countries around the world. We tell ourselves that if a mentally ill person thinks he is well and doesn't at the moment appear to present a danger to himself or others, no matter how delusional or fractured his or her grasp on reality, it's okay to let conditions get worse. If drugs are involved, especially accompanying symptoms like delusions and medicine noncompliance, research indicates that the chances of violence are significantly increased.
Try to get help under these circumstances for someone you love: It's a nightmare. "Has he threatened to kill himself?" and "Has he threatened to harm someone else?" are two questions to expect. Yet patients who have been hospitalized before after discontinuing medication for serious psychotic disorders, whose conditions deteriorate in predictable ways, especially ones who have become violent, shouldn't be required to express an explicit threat to self or others before being admitted to a hospital for treatment. It defies common sense to ignore a patient's history. No wonder so many mentally ill people are homeless or in jail. Such negligence would be grounds for malpractice with other diseases.
Deeds, who is working to help mental health patients and families, puts it this way: "When...it's been determined that that person is in crisis and needs service, there should not be a possibility that they are streeted." He added, "That person should receive the treatment they need. It's absolutely essential."
As if that struggle isn't enough for families to deal with, try to find post-hospital assisted living for a stabilized patient when support is needed. Finding such support is an endless nightmare for families and often prohibitively expensive.
Legal efforts at mental health parity with other illnesses and insurance coverage are steps in the right direction. We need more understanding of serious mental illness, greater awareness of its prevalence and a system of hospitalization and after care that does not have as a prerequisite expressed threat to someone's life. As a society, we need to do the hard work of sorting out what constitutes a pattern of worsening mental health.
It's time to stop passing the buck. Let's do the math. The data are in. Look at the statistics. Look at the families in pain struggling to find help. The buck stops at our front doors. It's time to get up off the cushy sofa of willful neglect and answer the door.
Kathleen also blogs here.