Should People Be Forced to Receive Psychiatric Treatment?

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.

What If Mental Illness Were Cancer?

Imagine your child has cancer. Or your sibling or parent. It is the worst kind of cancer–a brain tumor–and it’s growing. Your family member’s symptoms, at first just a headache, grow more severe. He is having problems with his vision and balance and is in pain. One day the pain becomes unbearable. The situation is dire, so you take him to the emergency room. 

You and your loved one are ushered back to speak to the triage nurse. You desperately want your family member to receive medical treatment as soon as possible. 

“What are your symptoms?” asks the nurse. Your loved one is too ill to answer, so you describe his pain, your fear that the cancer is growing worse, the need for urgent treatment.

“Do you feel like you are at imminent risk of dying?” the nurse asks your loved one. He is doubled over in pain and unable to answer.

“What kind of question is that?” you respond. “No, he is not at imminent risk of dying, but the cancer is clearly getting worse, and he needs treatment now!”

“I’m sorry,” she says, “but the illness is not severe enough for treatment. Unless he is in danger of dying, we can’t admit him. Come back when he is in stage IV.”

Shock and disbelief rush in. The nurse goes on to explain that not enough hospital beds are available for cancer patients. The hospital had to reduce the number of beds for cancer patients because laws are in place to discourage inpatient treatment. People shouldn’t be forced to receive treatment in a hospital when they could get it in a less restrictive environment in the community, she tells you.

“But he needs inpatient treatment,” you plead. “The kind of care he needs is not offered in the community.”

“I’m sorry,” the nurse says. “There’s nothing we can do for him unless he is close to death.”

“Wait!” you say, willing to do or say whatever it takes to get your loved one treated. “I misspoke. He is close to death. He needs help immediately.”

The nurse relents. He will be admitted after all, but first you need to wait for an available bed. 

You wait. And wait. It is midnight, and still, nothing is available. You spend the night, assuming it will be a matter of hours. You wait again the next day. Then, the nurse tells you it may take several days before a bed opens up. 

You can’t believe it. Don’t they realize how serious a brain tumor is? With each passing day, you envision the cancer growing, metastasizing. You know that once it spreads, the damage cannot be undone. Meanwhile, your loved one is suffering, and the pain is becoming unbearable. 

After five days, a bed finally opens up. You exhale with relief. Your loved one is transported to the cancer unit, and you decide to go home and rest. 

The next morning you call the hospital, eager to see how your family member is doing. Your call is transferred to the cancer unit, and you ask for him by name. 

“I’m sorry, but we can’t confirm or deny that anyone is here by that name,” says the woman on the other end of the phone.

“What?” Your mind is swimming with confusion. “I know he’s there. He was admitted yesterday. I’m a family member.”

“I’m sorry,” the woman persists. “We have to protect patient privacy, so I can’t reveal any information about our patients.”

This is absurd. Whenever you have called other family members or friends in the hospital, you have never received this response. But then, you have never called anyone on the cancer unit before.

You drive to the hospital. Thankfully, a staff member lets you into the unit to visit your loved one. Once you enter, she locks the door behind you. 

“You’ll have to leave your cell phone in a locker,” the staff member informs you. “And your purse and jacket. Also, you can’t bring in any snacks or drinks for your loved ones.”

“Why?” you ask. 

“Those are the rules.”

“What about books?” 

“You can leave the books at the front desk. If they are approved, we will bring them to your loved one,” responds the staff member.

You wonder why these rules are in place, especially since they exist only for the cancer ward and not the other units.

Finally, you see your loved one. You learn that despite being admitted 12 hours ago, he has yet to see a doctor. The nurse gave him some medication for his pain, but no one has taken his history or asked about his prior treatments and medications. 

You find a nurse and ask to speak with a doctor. She tells you a doctor will make rounds tomorrow but you will not be permitted to meet with him. 

“Look, I need to speak with the doctor.” You are getting angry, but try to keep your voice even. You explain that you have vital information to share about your loved one’s illness and prior treatment. You want to learn what is happening with the cancer and how the doctor will treat it. Instead, she tells you that a social worker will call you later. 

You remember when your father was admitted to a hospital last year for chest pain. It was nothing like this. You were allowed to stay in his room while the doctor visited, which gave you the chance to ask questions and learn about the tests and treatments he would receive during his stay. You were a welcome partner in his care. You wonder why the process is so different in the cancer unit. Why wouldn’t the doctor want input from a family member?

Your loved one stays in the hospital for a week. He receives medication for his pain, but he is still experiencing other symptoms. On the eighth day, the social worker calls and says he will be discharged the next day. 

“But he’s not ready!” You plead with her not to discharge him. 

“The insurance company will no longer pay for treatment after 10 days. His pain seems to be better, so we can’t keep him here any longer.”

You are powerless. Your loved one is discharged without receiving medically necessary treatment. 

You know the illness is progressive. It will only get worse.

You are shocked by the indifference to your loved one’s suffering. The blatant discrimination of the system. The cruelty and unjustness of it all. 

The scenario described above is a realistic depiction of the discrimination faced by people with serious mental illness and their family members in the U.S. Discriminatory laws and practices deny medically necessary treatment for people with psychiatric illness. 

Crisis Response Is Too Little Too Late for People With Mental Illness

About a decade ago, I attended a symposium put on by my employer about the social determinants of health in Baltimore City. One of the presenters told a parable–it was one I hadn’t heard before, but I have since heard it applied to a number of social problems. I think it has particular relevance for the problems entrenched in our dysfunctional mental health care system.

The story goes: A group of campers are settling down by a riverbed when one of them sees a baby floating down the river. He jumps in the water to save the child. Just as he is climbing out, another baby floats downstream, and another rescuer jumps in. One baby after another is swept by the current, and all the campers jump in, frantically saving as many babies as they can. 

Even after grabbing passersby to join in the rescue effort, they are still outnumbered by the task. They save some, but not all. Finally, one of the men starts walking away. “Where are you going?” they ask. “You guys keep on rescuing. I’m going to look upstream to see who keeps throwing babies in the water.”

And that is a perfect description of what is happening with our mental illness care system and crisis response for people with mental illness. We read story after story about the deadly encounters between law enforcement and people in mental health crises. And then a flurry of solutions are offered: Defund the police! Train police officers how to deescalate a crisis. Send a social worker out with the police. 

Unfortunately, these solutions are the equivalent of diving in to save the baby. By the time law enforcement comes on the scene, our system has already failed the person in crisis multiple times. Police shouldn’t be expected to deal with the result of our failed mental health system. To fix the problem, we need to look upstream.

Family members of people with chronic, serious mental illness know what a feat it is to get consistent, effective care for their loved one. Trying to get an adult treatment who doesn’t want it is futile. In our country, a person has the right to refuse treatment, even if they are experiencing a psychosis that impairs their ability to make decisions about their medical care.

People seeking treatment for mental illness face a catch-22–a person may be deemed not sick enough to gain admission to a hospital, yet if that person commits a crime due to their illness, we say, “Why didn’t they ask for help?”

In truth, our system denies medical help for people with mental illness until they reach a crisis point. We have seen it again and again.  

Daniel Prude was released from the emergency room without medication or treatment only hours before his encounter with police. His family tried in vain to get him help. 

Ricardo Muñoz, who was killed by police, suffered from paranoid schizophrenia. “He was sick,” Rulennis Muñoz said of her brother. “It’s not a crime to be sick.” His family had been trying to get him help for years. He was routinely in and out of hospitals, with little follow-up care in between. 

And there is this horrific story. According to the report, “In the month before she wielded a knife against her son, [the individual] had called the sheriff’s office seeking assistance with mental health problems.” She had been discharged from the hospital for mental health treatment 10 days earlier. This unspeakable tragedy could have been prevented.

We have to stop failing people with brain illness, their families and our communities. Crisis response for people with mental illness is not enough. More and more are barreling along the current, headed for tragedy. Advocates have put forth solutions. It’s time to go upstream and fix the root cause of the problem.

Where Is the Outrage for the Mentally Ill?

Each week seems to bring another outrage to Americans. Last year, we were outraged by the treatment of immigrants–of locking children in cages. A few years before that was the “me too” movement. Practically every woman in the U.S. had a “me too” story, and we were–understandably–collectively outraged. 

Most recently, Americans have voiced their outrage about the treatment of Black people by police. And rightly so. These police killings are unjust and indefensible. 

But there is another group who is discriminated against, marginalized, mistreated and misunderstood–yet no one seems to care. Few people express outrage–or even concern– except their families. 

For those with first-hand knowledge of brain illnesses like bipolar disorder and schizophrenia–the public’s ambivalence is baffling. People with untreated mental illness are 16 times more likely to be killed in a police altercation. And nearly a quarter of people killed by police had mental illnesses. Yet no one marches for them.

Though the deaths of Daniel Prude and the 13-year-old boy with autism–whose families called police because of a mental health crisis–were covered widely in the media, the headlines largely centered on race and autism, not mental illness.  

We need a national conversation about how we treat people with mental illness. If a person is having a “mental health emergency”–usually a euphemism for psychosis due to a brain illness–the police show up instead of an ambulance. For many families, calling the police is the only way to get treatment for their loved one. Mental illness is a medical issue, not a criminal one.

For families of the mentally ill, getting adequate treatment for their loved one is extraordinarily difficult. Prude was discharged from the hospital after only three hours the day before he was killed. With a different kind of medical emergency–such as a cardiac arrest–he would never have been discharged before stabilization. 

Premature discharge is but one of the many ways discrimination is built into the health care system. Shortages of inpatient beds and psychiatrists, underfunding of services and lack of mental health parity are other barriers to treatment. 

Families of people with mental illness have long demanded change. But the lack of public outrage signals that it will be a long wait.