A reader recently wrote to me about involuntary treatment for people with serious mental illness and the challenges parents and loved ones face in caring for their family member.
He writes: I’ve lived with family members with serious mental illness for 50-plus years. First my mother, then later, one of my children. There is nothing harder.
There is a certain kind of grief when people you love suffer from deep psychosis. You live alongside them in a continuing process of grief and hope, then more grief and hope. We are asked to accept that “perpetual custodial care” is all that can be done, even when we know that recovery is possible—even when we have observed that medicine seems to make things better.
When a loved one is on medicine, they can begin to move forward in life and not be captives of deep fears that originate in psychosis. But what if they choose not to take medication?
Neither my mother nor my child has insight into their conditions when psychosis is active. As parents and loved ones, if policies were changed tomorrow and we were given absolute power over the treatment decision for our loved ones who show paranoid delusions, hear voices and suffer in ways that are disabling—but when there is no imminent risk of harm to self or others—what would we choose? And how forcibly would we make it happen?
Despite the impacts of the illness, there is still a thinking, feeling human being in there that needs to feel some autonomy, wants to be independent, but has not yet found the door to walk through or can’t turn the latch. How do we balance the residual effects of the traumatic experiences of forced treatment versus the disabling effects of the active psychosis of the illness itself?
Perhaps no mental illness topic evokes a more visceral response than involuntary treatment, both from those for and against it. Some argue that treatment against a person’s will is traumatic and a violation of civil rights. On the other side, family members of people with severe mental illness often say that without it, they are helpless to get their loved one treatment.
Some states have implemented assisted outpatient treatment, which is court-ordered treatment for those who meet strict legal criteria. But the program is unavailable to most individuals who need it. This, despite a study finding that 75 percent of those who underwent the treatment later reported that it helped them gain control over their lives, and 81 percent said the treatment helped them to get and stay well.
When a person is suffering from a devastating illness that can ruin their lives and the lives of others—I believe the compassionate thing to do is help them get treatment, even if they don’t want it. Although many well-meaning disability rights advocates argue the opposite, allowing people with psychosis to forego treatment is medically unethical.
With schizophrenia, treatment decisions can mean the difference between life or death, freedom or incarceration, a lasting sense of purpose or a lifetime of despair. Untreated mental illness can result in danger, crime and tragedy.
Every person and circumstance is different, of course. Many people with mental illness have insight into their condition and take medication willingly, while others successfully manage their lives without it. If you are not cycling in and out of hospitals and jails and are not a danger to yourself or others, no one wants to force you into treatment. Assisted outpatient treatment is reserved for people with the most severe brain illnesses.
What if there is no imminent risk of harm to self or others? I would argue that psychosis is unpredictable, so there is always the risk of harm to self or others. And the longer left untreated, the more the illness can damage the brain.
I understand wanting to allow a person autonomy and the argument that forced treatment can lead to trauma. But I can’t imagine a worse trauma than experiencing the terrifying effects of psychosis or the despair of incarceration or homelessness. Far from taking away a person’s autonomy, treatment can give a person their life back.
Some argue that involuntary treatment takes away a person’s civil rights. But, as family members who have helplessly watched their loved ones suffer often point out, there is nothing “civil” or “right” about letting a person deteriorate.
The choice to refuse psychiatric treatment is not akin to refusing cancer treatment. A person with cancer has the ability to make a rational decision. A person with psychosis—a state in which the brain is malfunctioning—does not.
Schizophrenia—a brain illness—causes disordered thinking that can leave a person incapacitated. Yet our laws give them the right to refuse treatment, even when their illness renders them incapable of making rational decisions. If the person refuses treatment, there is little family members or anyone else can do to help.
Why do people with schizophrenia refuse treatment? One of the hallmark symptoms of the illness is anosognosia—the inability to recognize one’s own illness, much like a person with Alzheimer’s cannot recognize their dementia. If you do not believe you are ill, you are not likely to take medication.
Paranoia, another common symptom of schizophrenia, can also lead to treatment refusal. A person with schizophrenia may believe people are trying to poison them or that doctors are part of a secret plot against them.
For the sufferer of severe mental illness, the decision to refuse treatment is not an informed one. No one in their right mind would choose jail, homelessness or death, yet these are the likely consequences of refusing treatment. Nor would anyone in their right mind choose to experience psychosis, which can be an utterly horrific phenomenon.
When schizophrenia took root in my brother’s brain in late adolescence and early adulthood, disordered thinking, voices and delusions began to torment him. These weren’t kind voices or imaginations of the “Casper, the friendly ghost” variety. They were cruel and terrifying, bizarre and dark.
In his reality, his loved ones were dying and suffering from abuse. The words and actions of others contained secret messages, directing him to do horrible things. TV newscasters mocked him. People on the street followed him.
His illness burned like a wildfire, leaving him confused, lost and terrified. He lived in perpetual fear and paranoia, like a nightmare he couldn’t wake up from. Worst of all, he didn’t recognize these thoughts and experiences for what they were—symptoms of an illness that could be treated.
For most of us, psychosis is difficult to understand because we simply can’t imagine it. We have no frame of reference. I think it helps to consider the experience of dreaming. Dreams are often strange and illogical, and sometimes terrifying, yet when in this dream state, we don’t recognize that what we are experiencing isn’t real. Only after we wake up do we realize it was all just a dream.
For a person with schizophrenia, taking anti-psychotic medication can be a similar awakening, as was the case for my brother. Once he was diagnosed and on medication, the fog of psychosis slowly lifted. He was grateful to wake up from the nightmare and realize it was caused by a brain illness. There was an explanation for his hallucinations and bizarre thinking, his dangerous behavior and paranoia.
In the many years that followed—as he stabilized enough to live independently, earn an associate’s degree, hold a job as a peer support counselor and become a speaker for NAMI’s In Our Own Voice—not once did he express regret for receiving treatment.
Medication gave him his mind back, allowed him to reconnect with his family, make new relationships, and create a meaningful life. Anti-psychotics made a life-changing difference. Treatment helped him find self-worth, a sense of purpose, and reconnection with his family.
Without treatment, he would have accomplished none of this. And what a senseless tragedy that would have been.