Managing Non-Adherence in Schizophrenic Patients Following Their Release From Prison

Peter Salgo, MD: What happens with this nonadherence? What happens to the patient, and what’s the cost to society?

Mauricio Tohen, MD, DPH, MBA: A high-risk period for individuals when they’re released from the incarceration system is when they don’t have a follow-up treatment. When in jail or prison, they receive treatment regularly, but when they’re released, their administration is tentative. Most of the time, we see in the psychiatric emergency [departments] individuals who were just released, avoiding their medication while out in the community.

Peter Salgo, MD: Or the medications change because they’re too expensive.

Judge Steven Leifman: Correct. That’s most of the time. Or they just don’t see a provider.

Richard Jackson, MD: And they don’t continue on the treatment even if they are released with a provided plan. It’s a poor release system.

Judge Steven Leifman: There’s no planning.

Peter Salgo, MD: You’re telling me that there’s an abrupt transition without any planning for reintegration?

Judge Steven Leifman: Even before that, the same laws that apply out in the community apply in the correctional setting. If the person is refusing medication, the jail cannot force that person to take medication unless they are in a justifiably bad state in which they’re harming themselves or someone else, but then again, that does not last without a court order. It’s complicated, and that’s why the laws need to be reviewed.

Peter Salgo, MD: Do we have a cost estimate for this? I’m going to use the word adherence again, very broadly, and the lack thereof both by patients and the correctional facility. What’s the cost of this lack of adherence, once released, to society, to us? We’ve identified the individuals who benefit from treatment, but society is going to bear the cost if they don’t comprehend the situation.

Judge Steven Leifman: It’s the cost to everybody. You start with the patient: We are allowing people to live in their own hell wherein they’re at risk for rearrest, to suffer further illness and permanent brain damage because their psychosis is going untreated for extended periods. Then there’s the cost to society: the correctional and hospital costs. The doctor mentioned this population for whom we cannot cover primary health and psychiatric costs. Then there’s the crime and petty crime issues and homelessness that come along with it, in addition to the substance abuse issue that often leads to criminality. The whole system is broken, but it’s fixable, and that’s the difference here.

Mauricio Tohen, MD, DPH, MBA: But nonadherence of treatment is unique to the mentally ill. Most individuals with medical conditions will take their medication. For [people with schizophrenia], it’s not unusual for patients to refuse their medication. They’re unaware of their illness—ie, anosognosia, which is the unawareness of cognitive and psychological symptoms. That’s why the patients don’t take their medication. Furthermore, medication, sometimes, does not help, but rather yields side effects, which is a big problem. You might know that you’re ill, but you’re not functioning.

Peter Salgo, MD: But do you know you’re not functioning?

Richard Jackson, MD: Schizophrenia is significantly different from other disorders such as depression and anxiety because you’re aware of these symptoms. I might tell someone wonderful things about their medication because they think I’m trying to poison them, or they think they’re not mentally ill and therefore not interested in treatment. We need to go beyond this, and now we do have ways to attain court orders for outpatient treatment. You don’t have to put someone in the hospital to have court orders, so we’ve evolved in some ways.

Judge Steven Leifman: But there are [adverse] effects to these medications, and they make people feel different, which is why they don’t want to take them. The whole history of some of these medications is pretty cruel, and so this is part of the problem. I’m trying to get people to take and adhere to their medication. You need a great doctor to be able to diagnose them properly and administer the right medication. It’s not as easy as it sounds.

Peter Salgo, MD: But insight is important. How many times have you heard patients tell you, “I was feeling great on my medication—so good, I felt I could stop because they fixed me.” That’s a problem.

Judge Steven Leifman: And they do stop.

Mauricio Tohen, MD, DPH, MBA: It’s very common.

Peter Salgo, MD: It is common.

Nneka Jones Tapia, Psy.D: I don’t necessarily hear that from individuals who are taking antipsychotic medications. There’s a different level of [adverse] effects for individuals who are taking antipsychotic medications. I also have to add that when we’re dealing with individuals who are also minorities, there’s a historical context of missed diagnosis. We have to have doctors who are willing to take more time, dig in, and ask relevant questions so that we have less incidence of misdiagnosis.

Judge Steven Leifman: And maintain cultural sensitivity to the population.

Nneka Jones Tapia, Psy.D: Yes.

Peter Salgo, MD: In the early days of the AIDS epidemic, a lot of these folks believed that they were being poisoned by their medication, that this was deliberate. Is this what you’re alluding to? That there’s this paranoia, which the disease itself could be inducing?

Nneka Jones Tapia, Psy.D: Historically we know that African Americans have been misdiagnosed because of how they culturally explain their symptoms. We need culturally sensitive clinicians who can better understand how I might describe my illness and symptoms versus how one of my white counterparts may describe their illness.

Peter Salgo, MD: Got it. It would be nice to be able to listen properly.

Nneka Jones Tapia, Psy.D: Yes.

Peter Salgo, MD: That’s important.

Nneka Jones Tapia, Psy.D: Yes. And a part of that is also engaging the family and being empathetic—having an environment of empathetic support is more likely to bring out a conversation where you can say anything.

Judge Steven Leifman: Unlike in other illnesses, the first responder to somebody’s illness or behavior is typically law enforcement.

Nneka Jones Tapia, Psy.D: Yes.

Judge Steven Leifman: And they are going to be the least sensitive, unless they are trained properly.

Nneka Jones Tapia, Psy.D: Be knowledgeable.

Judge Steven Leifman: Yes, in addition to maintaining cultural sensitivity to deal with these issues accordingly. Sometimes the first response is, “Let’s lock them up—they’re not acting this way because they have a serious mental illness.”

Peter Salgo, MD: I noticed you mention family—this implies there is one.

Nneka Jones Tapia, Psy.D: Yes.

Peter Salgo, MD: And that it’s engaged.

Nneka Jones Tapia, Psy.D: Yes.

Peter Salgo, MD: And that it’s willing to help.

Nneka Jones Tapia, Psy.D: Yes.

Peter Salgo, MD: And often that’s not the case.

Nneka Jones Tapia, Psy.D: Often it’s not, but what we found at Cook County Jail was that when we did engage the family, the patient was more likely to adhere to the treatment plan.

Judge Steven Leifman: Which also raises the other issue: the HIPPA [Health Insurance Portability and Accountability Act] and CRF [Code of Federal Regulations] laws concerning privacy. This particular area needs some adjustment because it makes it difficult for the family to participate in the individual’s treatment plan.

Transcript edited for clarity.