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.

Why Do People With Schizophrenia Die Early?

People with schizophrenia and bipolar disorder have a life expectancy of about 25 years shorter than the general public. Heart disease is the most frequent cause of death for people with schizophrenia. Cancer and suicide also top the list.

My brother, who had schizophrenia, died suddenly at age 42 from a heart problem our family didn’t know he had. His death staggered me, not only because he died much too soon but because dying young on top of having a horrible brain illness that affects only one percent of the population seemed overly cruel. Shouldn’t the universe mete out suffering more equitably? I wish it were so.

Why do people with schizophrenia have a shorter life expectancy? Explanations vary. Some antipsychotic medications cause significant weight gain, which increases the risk of heart disease and diabetes. Interestingly, though, the mortality seems to be higher in those who do not take antipsychotic medication

Heavy smoking is common in people with serious mental illness, as are alcohol and substance use, and a sedentary lifestyle. Poor medical care, homelessness, poverty, social isolation and incarceration are other contributing factors.  

The suicide rate in people with schizophrenia is shockingly high—170 times higher than the general population. Suicide may be spurred by impaired thinking, psychosis or impulsivity and can happen without warning. In other cases, the negative symptoms of schizophrenia, such as an inability to feel enjoyment and a lack of motivation or sense of purpose, can cause hopelessness and despair.

Could other factors be the cause of premature death? Perhaps genetics can explain the diminished life expectancy. Research has uncovered that genes associated with schizophrenia are the same ones responsible for the immune system response. Could there be a link between the two? 

More research could uncover better answers as to why people with schizophrenia die earlier. As a country, we need to invest much more in finding the causes of schizophrenia and better treatments. 

Research into serious mental illness is underfunded and underprioritized. In 2019, the National Institutes of Health spent $455 million on serious mental illness research compared to $3.3 billion on mental health research. Shouldn’t we spend more on research for the most severe illnesses rather than on mental health and wellness? 

This lack of research is a slap in the face to those with mental illness and their families who have experienced untold suffering. It also defies logic. The costs of untreated serious mental illness are astronomical, with a conservative estimate of $317 billion. Psychiatric disorders are the number one cause of disability. Untreated or undertreated, they lead to homelessness, incarceration and tragedy. 

We desperately need better treatments. The current treatments, which are limited to antipsychotics, are not adequate—not even close. While these medications can make a tremendous difference for many—eliminating delusions and disordered thinking—they do not work for everybody, and they do nothing to address the “negative” symptoms of schizophrenia, such as loss of interest in life and lack of motivation. 

They also have troubling side effects for many, such as weight gain, involuntary movements, breast development and drowsiness. Furthermore, they don’t address the root causes of schizophrenia—they only treat the symptoms.

We need to do better for our most vulnerable. Every person with mental illness is someone’s son or daughter, or sibling. They are human beings whose lives have value. It is cruel and immoral for society to brush them off. 

Schizophrenia is a brain illness. And if we can invest in research that results in better treatment, more people can recover and live meaningful, long and productive lives.

Advocacy Alert: According to the Treatment Advocacy Center, you can urge NIMH to prioritize serious mental illness research by submitting a public comment on the NIMH 2020–2025 Strategic Plan before February 2, 2021. To comment, email karen.gavin-evans@nih.gov with the subject line “NIMH Must Prioritize SMI Research.” Learn more at Treatment Advocacy Center.

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. 

Four Things the Media Got Wrong About Mental Illness This Year

Mental illness was in the news more this year than in recent memory. Until 2020, many people were unaware that calling for help in a mental health crisis summons a police officer instead of an ambulance. After the shooting of Daniel Prude, similar stories emerged, putting mental illness and crisis response in the national spotlight.

News stories also focused on the devastating toll of the coronavirus on our mental health—the so-called “fourth wave” of the pandemic. The public learned that the mental health system is ill-equipped to meet the needs of those feeling the effects of social isolation, economic uncertainty, fear of the virus and loss of loved ones. 

Both of these narratives offered an opportunity to delve into the inadequacies of our broken mental health care system and educate the public about the need for reform. Instead, news stories focused little attention on how the system has failed to help the most severely ill for decades.   

Most of the reports this year served only to perpetuate misunderstandings about mental illness. As a result, we are left with short-sighted solutions that fail to address the underlying problems in treating the mentally ill.  

Here are four things the media got wrong about mental illness this year.

Conflating Mental Health With Mental Illness

This year, news stories focused more on those with mental health concerns brought about by the pandemic than those with serious mental illness. I don’t mean to minimize the effects of the coronavirus—many people are hurting, and the pandemic may indeed lead to more depression, anxiety and substance use disorders. However, no one is talking about helping the most severely mentally ill who have long been suffering. 

The Pandemic Relief Bill will offer increased access to counseling to help those with mental health needs. But it will not bring more hospital beds nor eliminate discriminatory laws that prevent access to treatment for people with mental illness. The needs of the most severely ill continue to be ignored.

Part of the problem is that the public conflates mental health with mental illness. The media and even some mental health organizations perpetuate this misunderstanding. On one side are the worried well—those with anxiety and low-grade depression—and on the other are people with severe, disabling brain illnesses. 

People with mental health issues are able to care for themselves and meet their basic needs. On the other end of the spectrum, people with severe mental illness—schizophrenia and other psychotic disorders—suffer chronic, unrelenting symptoms that cause devastation to the lives of the sufferer and those around them. Their rational minds are subsumed by delusions and disorganized thoughts.

People with mental health issues can be helped through counseling and self-care. People with severe mental illness need a full continuum of services—from long-term inpatient care to step-down units, intensive outpatient services, community programs, housing and supportive services. This continuum of services does not currently exist, but the media did not cover this angle.

Attributing Police Shootings of the Mentally Ill to Race

A spate of coverage in police shootings this year highlighted the mistreatment of people suffering mental health crises. For the most part, the news media framed this mistreatment as a race issue. However, discrimination against the mentally ill crosses all races. 

Statistics show that people with mental illness who died by police gunfire since 2015 were mostly white, accounting for 58 percent of deaths, with Blacks at 16 percent and Latinos at 13 percent. While racism may play a role in some cases, the common factor in all of these deaths is the presence of untreated or inadequately treated severe mental illness. 

These individuals were in crisis because of the failure of our mental illness treatment system. When police arrive on the scene, they naturally expect the individual to comply. But if you are experiencing psychosis, your illness may prevent you from obeying commands. 

You are not likely to comply if you are suffering from delusions—for example, if you know with every fiber of your being that you are the only one who can save the universe. These delusions are a symptom of brain illness. For the mentally ill, their delusions are every bit as real as the air we breathe. No calming voice, no attempt at reasoning can convince them otherwise.

People with mental illness who encounter police are indeed the victims of discrimination. But their disability is the root of this discrimination, not race.

Trying to Fix the Mental Health System by Improving Crisis Response

Crisis response received national attention this year. Proposed solutions to police shootings of the mentally ill centered on increased training for police and adding social workers to crisis response teams. While a non-law enforcement response is certainly ideal, better crisis response will not solve the problem. Instead, we need to address the root causes of a person devolving into crisis in the first place.

We need a more effective, compassionate system of care for people with brain illnesses. Right now, we have a shortage of inpatient beds, psychiatrists, housing and community services. But beyond that, we have systemic discrimination against people with these disabilities. 

We discriminate against the mentally ill by denying treatment until it is too late. To have a person hospitalized, in many states, they are required to meet a standard of dangerousness. By denying them treatment, we are forcing people to deteriorate while their illness goes untreated. As Rep. Tim Murphy says in this wonderfully informative Zoomcast by Healing Minds NOLA, you wouldn’t say to a person with heart disease: we can’t treat you now—come back when your heart stops pumping. 

Framing Treatment of Mental Illness As a Choice

Mental illnesses are disorders of the brain—the organ responsible for decision-making, reasoning, daily functioning— everything. Psychosis causes disordered thinking and delusions because it is a brain disease. Yet for some reason the public cannot grasp this concept.

We have no problem understanding that if someone has a broken leg, they will not be able to walk. If someone has a lung disease, it is no surprise that they get short of breath. Yet if someone has untreated schizophrenia—more accurately, an illness that affects the organ that allows us to think—we expect them to be able to think clearly and make rational decisions.

In a recent interview with Terri Cheney, author of the bipolar memoir “Manic,” the interviewer starts a question with, “Some people have someone they love who refuses treatment for their mental illness,” and goes on to ask how to help someone in denial.  

But denial is not the problem. Blaming someone with a brain illness for refusing treatment shows a complete lack of understanding of the illness. The inability of a person to perceive their own illness is a common symptom of severe mental illness.

When my brother began his descent into psychosis, he truly had no idea he was ill. He believed at various times that he was a famous basketball player, a doctor and a gifted musician. No amount of reasoning could have convinced him that these were delusions. His reality was as real as yours and mine. That is why he refused my family’s pleas to see a psychiatrist. It was never a question of denial.  

Lack of insight, known clinically as anosognosia, is a symptom not only of untreated schizophrenia and bipolar disorder, but also brain injury and stroke. Like a person who suffers a stroke and believes they are fine, so too, a person with psychosis believes they are sane. We do not let a person who suffers a brain injury or stroke refuse treatment. It should be the same for mental illness. Allowing them to refuse treatment is immoral. 

Will 2021 Be Different?

As 2020 showed us, there is no telling what the coming year will bring. But I hope 2021 will finally be the year that legislators, the media and the public finally begin to focus on meaningful change for people with mental illness. If not, we will continue to see police shootings, criminalization of the mentally ill, homelessness, and suffering.   

Mentally Ill or Person With Mental Illness? A Word About Person-First Language

Some people are quick to criticize the use of the term “mentally ill” instead of “person with mental illness,” arguing that we should always use “person-first” language. 

The insistence of person-first language relies on the premise that people are more than their diagnosis and that mental illness is somehow shameful. But mental illness is a brain disease—there is nothing shameful about it. If you have a serious mental illness, it is a part of your identity. When you live with it every day and it affects every aspect of your life, how could it not be?

When I worked for a children’s hospital, we were told to always use person-first language: person with autism, individual with a disability, etc. It was drilled into our heads and practically a cardinal sin if someone accidentally wrote or said “autistic.” But it turns out, the people who were insisting on person-first language were not the ones who actually had these conditions.  

In the autism community, many object to person-first language and prefer to be called “autistic.” The notion of separating autism from the person implies that autism has a negative connotation. It adds stigma when there shouldn’t be. Likewise, deaf people reject person-first language, preferring instead “deaf person” or “hard-of-hearing person.” While society encourages people to disassociate themselves from the condition, others find that notion offensive.

While I understand the intent of person-first language, I wonder how many people who have mental illness are actually offended by the term “mentally ill.” When I read about people who object to using the words “mentally ill,” “bipolar” or “schizophrenic,” it is invariably a parent, a professional or a caregiver and not the person with the illness. To my knowledge, there is not a strong coalition of people with mental illness who are calling for person-first language.

Are diabetics ashamed to have diabetes? Are epileptics ashamed of their epilepsy? Of course not. Why should they be? They are illnesses. So why should we assume the mentally ill should be ashamed of their brain disorder? What we really should be ashamed of is discrimination of the mentally ill.

When we impose language on other groups, we should think about why. Perhaps we are the ones who are uncomfortable, not the ones with the illness. My point is that you shouldn’t be quick to speak for a group unless you are part of the group. Trying to be politically correct sometimes can cause more harm than good. 

What do you think? Do you disagree? I would love to hear your thoughts.