In my last column, I summarized a lecture given by Jeffrey Swanson, Ph.D., a medical sociologist who studies outcomes with outpatient civil commitment. Several readers posted comments, including a very articulate letter from Evelyn Burton, a patient advocate who is on the Public Policy Committee of the National Alliance on Mental Illness–Maryland (NAMI MD).
Ms. Burton, along with one or two other commenters, believed that I missed the point of "assisted outpatient treatment" (AOT) and did not understand the target population; and I will contend that, with 20 years of experience in four community mental health centers, including Baltimore’s Health Care for the Homeless, I do understand that there are some people who might do better if forced to undergo treatment. I also understand that the consequences of untreated mental illness can be both trying and tragic for the patients and their families.
Because Maryland has not legalized forced outpatient care, I do not have experience with this, and I was struck by the fact that Dr. Swanson felt that much of the benefit of forcing treatment could be explained by the way AOT obligates society to the patient by granting these patients case management services, housing, and access to mental health care – things that society is not obligated to provide for those with severe psychotic disorders who willingly seek care. Done poorly, AOT is often unenforceable and poorly funded, and laws may be written such that the intended target population – the sickest, most psychotic members of society who cycle in and out of hospitals due to their noncompliance – are not clearly identified as those to receive "assisted" treatment.
While we may agree or disagree as to whether AOT is helpful and under what circumstances and whether it benefits those who might otherwise end up on the streets, in jail, or dead, the truth is that states with AOT still have psychotic people living on the streets and eating from the garbage. AOT has not proven to be a panacea for homelessness, suicide, or wasted lives. I realize that to a parent who fears her child might join those ranks, the heartbreak is immense, and the anecdotes about forced treatment offer hope.
I have no doubt that there are times when AOT, together with its attendant services, provides a lifeline. It’s unfortunate – if not disgraceful – that these services are not routinely provided to our sickest members of society. Still, it’s important to make sure that any given patient’s civil rights be considered. I’m also well aware that there are people who believe that a discussion of civil rights has no place in the treatment of psychosis, and there we will need to respectfully disagree.
While Ms. Burton’s heartfelt letter was articulate and compelling, I have to say that I was taken back by one paragraph. I expressed concern that patients do not generally endorse involuntary treatments, and I suggested that we need to look at why the treatments we offer are not palatable to those receiving forced care.
Ms. Burton responded:
"You do not need to waste your time trying to figure out why your treatment is not palatable to this particular group of individuals. NAMI MD families can tell you, you are asking the wrong question. It has nothing to do with palatable services and everything to do with anosognosia."
I was baffled by this. Compliant patients with good insight complain about side effects. If they take antipsychotic medications, they sometimes feel sedated, and they are told of the risks of weight gain, diabetes, and hyperlipidemia, conditions that can decrease both the quality and length of their lives. Sometimes we have little choice and are left to say that we believe the benefit to the patient is worth the trade-off, but with voluntary patients, the ultimate decision is theirs. Sometimes patients talk with their feet. Sometimes they fare better without medications, therapy, and the other treatments we have to offer, and sometimes they fare catastrophically worse. If they always did better, lived fuller, healthier, happier, and longer lives with the treatments we offer, the choice would be simple. Unfortunately, the medications we offer to treat psychosis are not benign.
The idea that "anosognosia," or simply lack of insight, is the pivotal issue, is a difficult one. People with substance abuse disorders, especially alcoholism and cannabis abuse, may insist that their use of these intoxicants is consistent with the societal norms around them and deny that it’s a problem, despite the difficulties it brings to them. And people with major mental illnesses may deny their existence, but still come to appointments and take prescribed medications. Patients can lack insight at one point in time and gain it later. The issue should not be the patient’s insight, because that label may be stamped on anyone who simply disagrees with their diagnosis or treatment recommendations.