‘I came home to find all our pets dead.” So said one of the family members attending the “Families of the 4%” summit on the Hill last month in Washington, D.C. This man, father of a son diagnosed with schizophrenia, had come to D.C. along with nearly 100 family members in support of the Helping Families In Mental Health Crisis Act, a bill that Representative Tim Murphy (R., Pa.) introduced June 4. “He loved those animals. Absolutely loved them. I know he did.” He was weeping as he told me this. That son is now one of the lucky few — he is receiving medication and ongoing treatment and is stable enough to hold a part-time job. About 4 percent of Americans are afflicted with a severe mental illness, and most are not so fortunate as his son to get treatment.
Having arrived from all over the country, at the invitation of the Treatment Advocacy Center, and assembled in front of lawmakers and their staffs, family members told their stories. One father told of the son who, while delusional, stabbed him, yelling, “Die, Dad, die! Go to heaven!” The father, himself a doctor, had tried desperately to get help for his son; he and his wife had warned authorities that they did not feel safe. To no avail. Their son is now in jail, still without psychiatric care. The catch-22 in the mental-health system is that psychiatrists, by law, often cannot medicate or in any way restrain a mentally ill person unless he is an “immediate” danger to himself or others — “immediate” being defined in many cases as within a window of three or four hours. In practice, this typically means that violence, sometimes lethal, occurs before treatment is mandated.
William Bruce was released, put on a bus, and given enough money to pay for a hotel room for two weeks. Two months later, he returned home and murdered his mother with a hatchet.
Joe Bruce has told his story a number of times, including before Congress, but the brute facts bear repeating: His schizophrenic son was discharged from the psychiatric hospital against the advice and repeated pleas from the family, who warned doctors that they did not feel safe and that their son needed ongoing treatment, including supervision and medication. The psychiatrist, social workers, and “patient advocates” disagreed, believing that they knew better than the family. William Bruce was released, put on a bus, and given enough money to pay for a hotel room for two weeks. Two months later, he returned home and murdered his mother with a hatchet. Naturally, no one on William Bruce’s treatment team — all of whom were government employees — was held accountable for their fatal error in judgment.
By chance, one of William Bruce’s psychiatrists happened to treat my own brother, also severely schizophrenic, a few years later. This psychiatrist advocated before a judge that my brother be released from the court-ordered guardianship under which he had been living, and under which his condition had markedly improved. My family pleaded and nearly begged the psychiatrist, arguing that more than four decades of experience had shown us that without ongoing supervision and consistent medication, my brother would soon stop taking medication and head quickly downhill. We had seen it happen dozens upon dozens of times, watched as he cycled between psych wards and jail, unable to hold a job or keep an apartment for long. More than once he had come very close to dying, sometimes endangering others, as when he led police on a high-speed car chase on a crowded coastal route. Our arguments fell on deaf ears. My brother was judged by this psychiatrist — who had so grievously misjudged William Bruce — as ready to be “free.” He was competent, the psychiatrist said, to make decisions in his own best interest. He had a “good understanding” of his illness, we were assured. We simply did not appreciate how “smart” he was, one young social worker (who had never seen my brother in a psychotic state) scolded us sternly.
RELATED: Is There a Right to Be Mentally Ill?
You can guess what happened. Shortly after being released from the guardianship, my brother stopped taking his medication (as is the pattern with many schizophrenics). Now that he was “free,” no one could require him to take his pills. He then went missing — in northern New England, in an exceptionally brutal cold snap. By the time the police found him, hundred of miles north from where he lived, his thinking was so disordered and he was so severely delusional that he was unable to form words in English. What followed was more than a year of mandated hospitalization and treatment on the highest-security locked ward of a psychiatric facility — quite the opposite of the “freedom” and “dignity” the psychiatrist and “patient advocates” had so confidently touted.
The privacy laws are themselves insane — because they treat mentally ill people as though they are in full possession of their faculties.
At least my sibling did not die or kill anyone while suffering hallucinations and in a state of severe psychosis. Others who relayed their experiences to lawmakers in D.C. told more harrowing accounts of family members who had committed suicide, or murder, or who had attempted suicide or murder numerous times. And all told of being blocked by privacy laws from having any input in the care of their family member — or even from being kept informed of the person’s whereabouts or status. Many times over the decades, my mother, for instance, called emergency rooms, in states near and far, trying to find my brother, desperate to learn if he was dead or alive, only to be told, “We can’t tell you if your son is here or not. We don’t have a release for that.”
Picture, if you will, hospital staff members asking a mentally ill person, “Do you authorize us to talk with your mother?” If that person is diagnosed with paranoid schizophrenia, he might believe that his mother is a grizzly bear, or an evil alien, or the queen of a satanic cult; in which case, he will of course not sign any release. The privacy laws in this regard are themselves insane — because they treat mentally ill people as though they are in full possession of their faculties.
Creigh Deeds, the Democratic state senator from Virginia whose mentally ill son stabbed him multiple times before committing suicide in 2013, recently testified before Congress in support of the Helping Families In Mental Health Crisis Act. In particular, he described the role that privacy laws played in obstructing treatment for his son:
HIPAA prevented me from accessing the information I needed to keep him safe and help him towards recovery. Even though I was the one who cared for him, fed him, housed him, transported him, insured him, I was not privy to any information that could clarify for me his behaviors, his treatment plan, and symptoms to be vigilant about. I did not know his diagnosis, prescription changes, and necessary follow-up. I had sought to have him hospitalized earlier, so he was wary of my having any information. So I was in the dark as I tried to advocate for him in the best way I could with the best information I had.
Murphy’s bill, which has garnered significant support from both sides of the aisle, including co-sponsorship by Congresswoman Eddie Johnson (D., Texas), would, among other crucial reforms, adjust privacy laws so that family members could access information about their loved ones. For those of us who have lived with a mentally ill family member, the Murphy-Johnson bill is not only a step in the right direction. It is a godsend, the first glimmer of hope in a lifetime of battling a mental-health system that seems almost expressly designed to harm the very people it is supposed to help. We hope and pray that Congress will come to its senses and finally pass a bill that might begin to get real treatment to the people who need it most.