Treatment refusal occurs in medical/surgical settings across the world every day: a child with leukemia resisting a painful bone-marrow biopsy, an elderly man with Alzheimer's fighting his medication, a woman awakening from a coma and demanding release. And in most instances, "society" — as represented by the family, the health care providers and our legal institutions — has well-established, ethical, effective and efficient mechanisms for enabling the treatment to proceed.
But that same society frequently fails people with severe mental illness who also have a related affliction known as "anosognosia" — essentially the inability to recognize one's own illness, however obvious it may be to everyone else. Imagine an 18 year old woman with schizophrenia who believes she is God and who once leapt off a balcony to prove her gift of flight only to fracture her skull and spine. She responds well to medication while hospitalized, but after she's released, she refuses to take it, believing she's not ill, and the cycle repeats.
She is certain to her core that nothing is wrong.
This problem — severe in a select few cases — is the single greatest obstacle we face to the humane and successful treatment of severe mental illness. It is what keeps so many from seeking or consistently adhering to treatment. The typical consequences are wasted lives and broken-hearted families. Much more rarely — but undeniably — non-treatment of mental illness leads to the horrific violence we have seen at Virginia Tech, Tucson, Aurora, Newtown, et. al.
Ours is a free society with a very high tolerance of unconventional behavior. So long as people don't hurt themselves or others, we are inclined to "let them go their own way," even if it means a life of homelessness, poverty, physical illness and shortened life span.
It was not always this way. Until around 1960, most people with severe mental illness lived permanently in state hospitals ("asylums"). In the last decades, all the states have emptied their state hospitals ("deinstitutionalization"), and the majority of patients are now successfully treated in the community. But people with anosognosia, who tend to stop their treatment as soon as they leave the hospital, have been failed by deinstitutionalization. This is a particular problem in Maryland — one of five states where the law does not allow doctors to keep a patient under court-ordered commitment after release into the community. Instead we watch helplessly as our patients with anosognosia stop their medication, leave their supervised housing, abandon counseling and end up back in an emergency room where they are then readmitted to a hospital. We call this "the revolving door."
The costs of the revolving door are huge — first and always foremost, to the poor patients, who often die by suicide or exposure or trauma. Such patients sometimes hurt others, either by way of assaults and property destruction, or by instilling fear, as we saw when a neighborhood group sent us a petition to keep their neighbor hospitalized "until he is truly well this time," after he had terrorized their community after each of four consecutive releases. And the financial cost? There are around 500 "high utilizer" Maryland Medical Assistance patients who account for 20 percent of all inpatient psychiatric costs and/or who have gone to emergency rooms six or more times a year. Their average annual hospital bill is $72,000, for a staggering total annual bill of $36.9 million not including the cost of medications. And not to mention clogging emergency rooms and associated police, jail, prison and court costs.
An "assisted outpatient treatment" (AOT) law, also called Outpatient Civil Commitment, would help immensely in Maryland. The concept is simply to require a patient who has demonstrated difficulty adhering to outpatient treatment on a voluntary basis to follow a court-approved treatment plan as a condition of remaining in the community. At the same time, the court order requires mental health providers to provide adequate monitoring and the full array of services listed in the treatment plan. Many AOT programs in other states have been the subject of studies — most exhaustively in North Carolina and New York — and have been shown to reduce hospitalization, homelessness, incarceration and, not the least, the costs of care for individuals with major mental illness. All that AOT does is bring the legal authority to compel treatment, already established for decades in hospitals, to the modern era of outpatient care. In other words, the law needs to be deinstitutionalized, too.
It is time to update the rules. We can bring treatment before tragedy to the severely mentally ill in our communities, if we so choose. A bill to create an AOT program will be introduced in the Maryland legislature. It is up to all of us to make sure it passes.
Dr. John J. Boronow is a senior psychiatrist in the Sheppard Pratt Health System. His email is email@example.com. Dr. Steven S. Sharfstein is president and CEO of the Sheppard Pratt Health System. His email is firstname.lastname@example.org.
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