Five Reasons Why We Can’t Get Help for Mental Illness: Interview with Lynn Nanos

I want to share with you my cool opportunity to talk to an expert on what goes wrong when families try to get help for their loved ones with severe mental illness. You may know that in 2013, my family suffered the ultimate breakdown: my son with untreated severe mental illness killed his grandmother, my mother. He’s now perfectly sane on medication, and it was even fairly easy to find a medicine that worked. Why couldn’t all that be done ahead of time before he struck out, saving my mother’s life and his freedom?

Ruth: I’m talking to Lynn Nanos, a social worker specialized in evaluating people for inpatient admission and other services in Massachusetts. Her book is titled Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry, and I’m reading it now. It is packed with stories and facts — anything you want to know about these problems, the explanation is in this book. It’s a great resource for advocates as well as good for anyone who’s just curious what this whole problem is about. Lynn, how many years have you worked in this day to day evaluation role?

Lynn: Approximately ten and a half full-time years.

Ruth: I get the impression that you wrote Breakdown because even after all that experience, you yourself almost can’t believe how bad it is. I’m about halfway through and I have so many questions.

So the first thing I have to ask you is about proving that someone has mental illness. You know, in daily life, we try get everything “in writing.” Back in 2012, when I started trying to get help for Levi, friends suggested that if I could pass on written proof of his mental illness to the outpatient treatment providers and hospital emergency department, he’ll get the help he needs. It didn’t work. Why not?

Lynn: When I was an inpatient social worker, I attended many court hearings where the hospital fought to hold the patients against their will for an extended period. I recall family members presenting verbal and written evidence of danger due to serious mental illness to the judge. The lawyers representing the patients immediately charged “Hearsay!” Unfortunately, many judges agreed with them and refused to consider the reports.

Ruth: Wow, so “written evidence” just doesn’t work here. That’s one major difference from most legal issues. Second, my son’s writings showed he was not sane, but they did not directly show danger. He didn’t write threats or describe violence, rather he just had a bizarre idea of what reality around him was like. And I heard professionals tell me on several occasions that “it’s not illegal to be delusional.”

Lynn: A lot of professionals also say “as long as he’s not threatening to kill himself or anyone else, he has the right to be psychotic.” I used to go along with them and say the same thing. But some important psychiatrists, such as Dr. Darold Treffert and Dr. E. Fuller Torrey, disagree. Eventually I followed them because they made sense [click here to read Lynn’s thoughts about the culture of psychiatric treatment]. Someone with heart disease does not have the “right” to have unstable blood pressure. Someone with end-stage dementia does not have the “right” to be completely disoriented.

You raise an interesting point about the validity of written material, but it seems that the more significant barrier to Levi getting the help he needed was restrictive inpatient criteria.

Ruth: Absolutely, the key problem was that he didn’t want to be in the hospital, and the only way we could overrule his wishes was if there was some kind of danger involved. On one occasion he cut himself lightly, so that counted. He never did anything like that again; in fact, someone told him “just avoid harm if you want to stay out of the hospital.” Oh, great. It’s not like avoiding harm meant he actually got any better. He just quietly got sicker.

Blacked out window, bugs on the walls: classic signs of paranoid schizophrenia (author’s photo)

I think there is a basic point that shocks many people when they first run across it: you can prove someone is completely insane, and legally it just doesn’t matter. It’s irrelevant. It’s beside the point. Hospitalization is about legality, not sickness. It’s treated like an arrest, in some ways.

Lynn: Many people are not aware that “insanity” is actually a legal term that’s never used to describe someone in clinical records. We can prove, sometimes easily, that someone is completely psychotic. But per legal standards, that in itself is not sufficient to qualify for inpatient confinement, especially involuntary confinement. Whether the patient wants help is not part of inpatient criteria. When faced with patients who meet inpatient criteria, I am more concerned about those who do not want help than those who do.

Ruth: Yes! Those who want help are halfway there. People have to understand that the part of the brain that lets you know something is wrong may actually be neutralized by the disease. We see that with some stroke or dementia, too. So how common is it for you to evaluate someone who is clearly sick enough to be in the hospital, but because they don’t know this, it’s not enough?

Lynn: It’s very common. Let’s be clear, anyone who is completely psychotic needs professional help. But someone can have this level of psychosis with the ability to eat, sleep, clean himself, and pay rent, along with not posing a risk of serious physical harm to anyone. This is the gray area, where they need help but legally it can’t be forced. The law doesn’t care that the psychosis will worsen and interfere with the ability to attend to basic needs in the future. Nor does the law care that someone might get killed due to delusion in the future. If a patient has lost weight in the last couple of weeks because of the belief that aliens are poisoning her food, I can authorize an involuntary hold. If a patient expresses a plan to physically assault someone else due to delusion, I can authorize an involuntary hold. The law only cares about what is imminent.

Ruth: And even when you do authorize a hold, they’re admitted to the hospital but you might find out a few hours later that they’re back on the street. Breakdown has lots of stories like that. You wrote one thing about hospital funding that shocked me. Can you explain here why hospitals are motivated to admit a patient but not to keep him or her?

Lynn: Breakdown uses a restaurant analogy to describe why hospitals often prematurely discharge patients. Imagine going into a restaurant hungry without having made a reservation. As you wait to be seated and grow impatient, you notice customers chatting long after they have finished eating. The restaurant doesn’t get paid for that time. It only gets paid for the food that was bought. Similarly, hospitals’ revenue does not increase throughout the course of patients’ stays. Rather, the highest revenue is during admissions of patients. This is why hospitals prefer to discharge patients as quickly as possible. They want to make room for more admissions.

Ruth: Unbelievable. Professionals in a hospital must be so conflicted: they often do press to keep a very unstable patient, but at the same time, they’re under pressure to move them on out — like a restaurant. You’re in a unique insider position as a social worker when you see these things. When you can’t get someone to qualify for inpatient treatment, is there anything else you can do, as a professional?

Lynn: When someone doesn’t qualify for inpatient, there are lots of therapeutic skills that can be employed. In fact, it’s what I do in the majority of emergency cases. I provide empathy, support, validation, praise for strengths, and encouragement to use healthy coping skills. A major piece of intervention involves education. If anosognosia (the inability to know there’s a problem) is present, this can be impenetrable. So it’s important to not be too direct when faced with psychosis.

Ruth: You have to be diplomatic because they can’t process what you’re telling them?

Lynn: For instance, if a patient is complaining about evil messages being transmitted into the room through the vents, stating “I’m not hearing them” is better than “There are no evil messages coming through the vents.”

Ruth: It prevents them from arguing, I guess. It’s a method I never really mastered when talking to my son before he was finally medicated in jail. Families feel desperate, so they argue, “There are no evil messages!” It doesn’t work, but it’s a terrifying place to be in, arguing with your son or daughter while facing continual turn-downs from hospitals. Do you have any parting advice for the families facing restrictive inpatient rules?

Lynn: Photographic or even video-recorded evidence of danger can be very powerful when trying to get a loved one help. In one inpatient court case, the patient’s family presented photographic evidence of the inside of the patient’s apartment to the judge. The judge saw her entryway blocked with furniture, outlets covered with plastic, an empty refrigerator, windows covered with black plastic bags, papers stacked up to the ceiling, and garbage that had not been removed in months. The hospital won, the patient stayed.

Ruth: Photographs aren’t always easy to get, so it’s good to know they can make such a difference. Lynn, let’s talk again soon. I’d like to tackle the question of mental illness and violence, because you have some great points about one of the major studies. Till next time…

Readers: Please watch for the next interview installment with Lynn Nanos, author of Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry. Here’s a link to Lynn’s website, lynnnanos.com, which includes a download purchase option. Her book is filled with information; if you advocate on these topics, here are all the numbers, all the facts. If you’re incredulous that evidence of mental illness is actually “irrelevant,” read her stories! [new: “Mental Illness and Violence: About that MacArthur Study…” “Psychiatric Treatment Culture: The Effects of Losing Hope”]