Anosognosia and Danger

It's important to understand that true anosognosia is quite real. It’s not a case of psychological “denial.” One of the brain’s many functions is to be aware of itself, receiving feedback from the world. Am I walking off balance? Am I standing still or contorting my body in seizures? Am I speaking too quietly or too loud? Am I making sense when I talk? Do people around me find my appearance surprising or frightening? Am I seeing the visible world accurately?

Anosognosia is damage to the brain’s ability to be aware of feedback about itself. When someone is unaware that they have a serious problem, they aren’t likely to consent to treating it. At what point does their family, or society in general, have a right to interfere?

Personal rights vs. care

In American society, we value giving individuals as much personal freedom over themselves as possible. Once someone is over 18, he or she can choose a lot of harmful behaviors, and we assume that they have weighed up the risks. But in the anosognosia of severe brain-behavior disorders like dementia, paranoid schizophrenia and Bipolar I, that’s precisely what is wrong. They can’t tell there is a problem even when it’s severe and obvious.

At what point can we interfere? There’s a legal standard for determining when we can overrule someone’s personal decisions to require involuntary treatment.

In Pennsylvania, involuntary treatment is only legal at the point where there is danger to the person or to others around him. The danger has to be clear and present. It needs to be provable to a judge, using evidence of threats, plans and actual harm. It needs to be immediate and urgent. Future danger should be provable that it’s going to happen in 30 days. PA’s legal language describing all this.

If you can prove that a family member has clear and present danger to self or others, you can require them to stay in hospital treatment against their will. The hospital may force them to take medication against their will. Sometimes, that’s enough to create real change when medication restores the brain’s ability to see the problem and they agree that it’s better to be treated. Other times, even on medication, the individual still cannot agree that he or she needs treatment.

But what if treatment is urgently needed before danger?

That’s how it was for us. My son Levi was gentle, polite, and adamant that he would not hurt anyone. And yet he urgently needed to be forced to take medication. He had clear disability. He was losing his ability to understand other people’s actions and sometimes he did not understand our speech. He had no ability to tell that he was acting any differently from before. He could do things that made no sense, like sitting outside in the snow for hours or setting money on fire, but he had no idea that he was being weird.

When Pennsylvania requires “clear and present danger” for involuntary treatment, it is forcing families to tolerate growing disability, as well as a lot of danger that can’t be proven “clear and present.”

In severe brain-behavior disorders, the line between disability and danger is easily crossed in a minute. It may not proceed in a predictable way from threats to attempts. We can only block danger by allowing disability to be legally considered. We don’t require that an aging parent with dementia become violent with “clear and present danger” before allowing a doctor or family member to make treatment decisions. We shouldn’t require it for paranoid schizophrenia and Bipolar I, either.

Assisted Outpatient Treatment programs use the disability standard in addition to danger. Is someone unable to care for himself? Then it’s time to act.
PA amended law permitting disability standard (if counties use it)