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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.

What Causes Schizophrenia?

No one knows exactly what causes schizophrenia, but we do know that it’s a brain disease. The brain is an incredibly complex organ. Connectivity of neurons, brain structure and chemical makeup all intersect, resulting in an organ responsible for every movement, breath, thought and behavior. 

Hundreds of millions of neurons form an intricate pattern to help us think, make decisions, communicate and experience life. For people with schizophrenia, the normal brain processes for some of these functions are impaired or disrupted—resulting in symptoms such as disordered thinking, altered perceptions, delusions and cognitive difficulties. Brain imaging of people with schizophrenia shows some of the abnormalities as reduced gray matter and disrupted neural connectivity

So schizophrenia is clearly a brain disease, but what causes it? Schizophrenia has a strong genetic component. Studies show that if one identical twin has schizophrenia, the other has a 40 to 50 percent chance of developing the disease even if raised separately.

The illness tends to run in families, and although a person may develop schizophrenia without any known relatives with the disease, a closer look at the family tree may reveal possible illnesses that went undiagnosed—an uncle or a cousin said to have behaved strangely or a relative who died by suicide or addiction.  

There is also a genetic link between schizophrenia and bipolar disorder, and mental illness and addiction, so it is not uncommon to have more than one of these illnesses in a family. Psychotic disorders may even exist on a spectrum, similar to the autism spectrum, rather than being discrete illnesses. 

Unfortunately, there is no single schizophrenia gene that could lead us to a definitive treatment or cure. Instead, studies indicate that there may be hundreds of genes involved

Some of the genes implicated are related to the immune system, but the exact nature of the link is unclear. One theory based on researchers’ findings is that these genes may have variations that result in over-pruning of brain synapses—an error of the naturally occurring brain maturation process that removes unneeded connections between neurons to improve brain efficiency. 

This excessive elimination of synapses may explain the impaired thinking, planning and cognition that occurs with schizophrenia. The pruning process typically happens in early adulthood—the same time that schizophrenia typically manifests.

Genetics alone does not explain schizophrenia. Scientists say there is also an environmental component. Contrary to theories that were popular long ago and may perhaps still be prevalent—schizophrenia is not caused by abuse or bad parenting. I can attest that my brother, who had schizophrenia, grew up in a loving, nurturing environment alongside me with no abuse or trauma. 

However, environmental factors can play a role. Genes and the environment can interplay and result in changes in brain development and functioning. Researchers have found that traumatic stress can alter gene expressions that make a person more vulnerable to psychiatric illness. Other studies have found correlations with infection, whether in utero or in life. There is also a link between cannabis use during adolescence and schizophrenia. 

Because we don’t know exactly what causes schizophrenia, we don’t have perfect treatments. Antipsychotics can help with some but not all symptoms, but we don’t know precisely why they work. And unfortunately, antipsychotics don’t work for everyone and they can cause severe side effects, including weight gain (which in turn, increases other health risks) and involuntary movements. 

Right now, these medications are the best treatments we have, and for most, the benefits of the medications outweigh the adverse side effects. But clearly, we need more research and more effective treatments.

And we need compassion. Given that schizophrenia and other mental illnesses are brain illnesses, I have never understood why people blame the sufferers. We see the homeless person muttering to themselves on the street and say, “Why don’t they get a job?” We joke about people ending up in the psych ward or ‘looney bin.’ We speak in hushed whispers about the student admitted to the psychiatric hospital as if it’s a shameful secret rather than an illness. We skip organizing a meal train for the mother whose son was diagnosed with a psychiatric disorder. 

Will this lack of compassion change once we find a definitive cause? I look forward to a world in which researchers find the long-awaited answer to what causes schizophrenia. I believe one day, probably not in my lifetime but someday, we will have safe, effective and compassionate treatment—and ultimately, a cure.

Discriminatory Laws Harm People With Mental Illness

It’s Mental Illness Awareness Week. But what we really need to be aware of are the discriminatory laws that harm people with mental illness and prevent treatment for the most seriously ill.

The recent death of Daniel Prude and other disturbing incidents have focused national attention on how police respond to mental health crises. But few people are investigating the failures of the mental health system that lead to these police encounters in the first place—failures that cut across all races and incomes.

The mental health system is hamstrung by a series of discriminatory laws that limit the number of crisis beds, prevent people from receiving treatment until they have deteriorated to the point of dangerousness and block families from participating in their care. The result is a disastrous and inadequate system of care for people with brain illnesses like schizophrenia and bipolar disorder.

In the case of Daniel Prude, he was taken to the emergency room for psychiatric care but released without treatment or medication hours before his fatal encounter with police. Why he was released so soon has not been fully answered, but if a person seeking treatment appears calm and rational during observation, most state laws allow them to leave whether they are in crisis or not. 

A spokesperson for the University of Rochester Medical System said in a statement that they are bound by a New York state law that prohibits hospitals from keeping a person involuntarily for more than 24 hours unless they are likely to cause serious harm to themselves or others and that requires immediate observation, care and hospital treatment. Doctors apparently determined that Prude didn’t meet this standard. 

The statement also called Prude’s care “medically appropriate and compassionate.” It was neither.

When we talk about mental illness awareness, we need to truly understand the nature of mental illness. Psychotic disorders like schizophrenia are brain illnesses that cause disordered thinking, delusions and altered perceptions of reality. The longer left untreated, the more damage occurs to the brain and the less likely they are to recover. 

Most people with untreated schizophrenia lack insight—they are so sick they don’t know they are ill. Known clinically as anosognosia, it is a symptom of the disease itself. If the organ responsible for thinking is impaired, rational decision-making may be impossible.

In the quest to protect a person’s civil rights, we end up taking away a person’s right to medically necessary treatment, leading to tragedy, jail or both. People with untreated serious mental illness cycle from hospital to the streets to jail and back again, and no one is held accountable. It’s a game of hot potato and everyone loses.

In Maryland, where I live, despite excellent hospitals and mobile community-based treatment programs such as assertive community treatment, the state laws governing mental health treatment are the worst in the nation, according to a recent report by the Treatment Advocacy Center

Maryland’s commitment laws do not consider a person’s history of psychiatric deterioration in the decision to admit and instead rely on an ambiguous standard of “danger to self or others” that is open to interpretation. 

And Maryland is one of only three states without assisted outpatient treatment—court-ordered treatment that can prevent people from ending up homeless, in jail or dead and restore meaningful lives.  

Until we remove the barriers to treatment, not only will we continue to see fatal encounters with police, but people with serious mental illness, their families and our communities will continue to suffer the consequences.

Equal Rights for All But the Mentally Ill

Of all the groups that have faced discrimination in our country’s history, one group stands alone. People with serious mental illness are the only group in which discrimination is still not only socially acceptable, but perfectly legal. 

Unless you have experienced mental illness in your family, you may be unaware of all the ways this discrimination exists. People with brain illnesses like schizophrenia and bipolar disorder are routinely denied medically necessary treatment based solely on their disability type. 

One way this happens is through laws that withhold treatment until the person has deteriorated to the point of dangerousness. When a person is experiencing a mental illness crisis, they will be turned away by the hospital unless they have threatened to harm others or have a plan to kill themselves. 

A person who does not meet the “danger” standard is left to deteriorate further. The longer psychosis is left untreated, the more damage occurs to the brain, and the worse their chances for recovery.

If a family does manage to get their loved one admitted for treatment, the person is inevitably discharged before they are medically stable. You need look no further than the daily headlines to see this play out again and again. 

Take this example: Three attacks linked to mental illness in 30 days leave five dead in Metro Detroit. Both the police and families sought treatment for the individual, and each time, they were released much too soon and with no follow-up. Not surprisingly, things ended in tragedy. 

Untreated mental illness results in danger, crime and tragedy—every day and in communities all across the country. And we let it happen over and over again. Not only does withholding treatment violate a person’s rights, but it also puts their families, the police and the public in danger. Why do we allow it?

We would never tell someone with cancer, “You are only in stage II, so we can’t treat you. Come back when it’s progressed to stage IV,” or say to a diabetic, “We can’t treat you until you are in a diabetic coma.” These scenarios are unthinkable, yet have become normalized in mental illness. 

It is morally wrong to deny treatment to any group based on their disability, so why is there an unspoken carveout for the mentally ill? Denying treatment to this group is blatant discrimination, yet it is somehow acceptable to doctors, hospital leaders, politicians and the general public. 

Why is one group of disabled people deemed less worthy than others? Is a person with autism or brain cancer more worthy than a person with schizophrenia? Is a person with Parkinson’s or dementia more valuable than a person with bipolar?

All are people with brain illnesses. All deserve the right to receive medically necessary treatment. No exceptions. 

If you believe in equal rights for people with brain illnesses, please consider joining the National Shattering Silence Coalition. NSSC speaks out about federal, state and local policies that impact adults and children living with serious brain disorders commonly referred to as “serious mental illness” and advocates for change.

Can Suicide Be Prevented?

Suicide awareness campaigns encourage people to talk about suicide, look for warning signs and call a suicide prevention hotline when in crisis. But can suicide really be prevented? For some people, these campaigns may help. But for others—particularly those with serious brain illnesses like bipolar, schizophrenia and major depressive disorder—it’s not nearly enough.

When I was a junior in college, one of my professors began acting strangely. After weeks of teaching us economic theory, his lectures abruptly veered into his personal life. In embarrassing detail, he regaled us with stories about an intense emotional connection he shared with a woman, his experience with psychedelics and his disdain for the academic system. 

The next week, he announced that our final grades would be based not on homework and tests, but instead randomly generated—an A, B, C or D based on the luck of the draw. Someone must have complained to the school, because after that class, I never saw him again. A few weeks later, I learned that he had stepped in front of a train, taking his own life.

Could his suicide have been prevented? I don’t know. But I do know that preventing suicide is much more complicated than suicide awareness campaigns would have us believe. 

These campaigns tell us that identifying early warning signs and connecting people to crisis hotlines can prevent suicide. While well-intentioned, they imply that if only families had recognized the telltale warning signs, their loved one could have been saved. This message seems not only cruel to the surviving family members but also misleading. If only preventing suicide was that simple. 

While it is commonly reported that people show sudden signs such as hopelessness, withdrawal and giving away possessions, many suicides happen without warning. In other cases, suicides happen after years-long struggles with psychiatric illness. Rather than new behaviors emerging, these feelings of hopelessness, mood swings and thoughts of suicide may have long been part of a person’s daily existence. How could their families possibly predict when suicide was imminent?    

Unfortunately, suicidal thoughts are a common symptom of serious mental illness, and an estimated 90 percent of people who die by suicide have a mental disorder. People with bipolar disorder have a 20 to 30 times higher risk of suicide than the general population, and up to half of people with schizophrenia or bipolar disorder attempt suicide at some point in their lives. Major depressive disorder also has a higher risk of suicide.

It is difficult to understand the mindset of someone who is suicidal. This journal excerpt, written by a woman with severe depression who later succumbed to suicide, eloquently describes the depths of such despair: 

“The pain is all-consuming, overwhelming… I live in hell, day in and day out. Every day, I break down a little more. I am eroding, bit by bit, cell by cell, pearl by pearl. I am not getting any better. ‘Better’ is alien to me, I cannot get there… I am a hopeless case. I have lost my angel. I have lost my mind. The days are too long, too heavy; my bones are crushing under the weight of these days.” (Published in Kay Redfield Jamison’s book “Night Falls Fast”).  

A person in this state is not likely to call a crisis hotline, and hearing that their life matters and is worth living wouldn’t make the slightest difference. Overcoming this intense emotional pain and despair requires more than a caring voice on the phone. It requires a regimen of long-term intensive treatment, medication and support that is often elusive, and even that may not be enough. 

When we focus on suicide awareness campaigns, money that could be spent on care and treatment is diverted to ad campaigns and outreach. While well-intentioned, more awareness and crisis hotlines are not what we need. 

So what can help? 

Removing guns– Getting guns out of the hands of people with serious mental is just common sense, especially given that many suicides are impulsive. One study found that, in most cases, the decision to die and the act itself happen the same day, and in nearly a quarter of the cases, they contemplated suicide for no more than 5 minutes. If you take away the means in that moment, you could save a life. In some states, Red Flag laws allow firearms to be temporarily removed when a person is a danger to themselves or others. However, not all states have this law, and not everyone knows of its existence.

Removing barriers to mental health treatment – It is incredibly difficult to find a psychiatrist accepting new patients, let alone a psychiatrist who accepts your insurance without a weeks-long wait. We have mental health parity laws in place, but we are far from reaching that ideal. There is also a shortage of inpatient beds. The lack of beds is due to a discriminatory federal rule known as the IMD Exclusion, which prohibits Medicaid from reimbursing states for psychiatric care in facilities with more than 16 beds. The result is that care is simply not available for people who need it.

Implementing a continuum of care– In a typical scenario, a person hospitalized for psychiatric illness may be discharged 5 to 7 days later, regardless of whether they have stabilized, with a list of medications, resources, and in many cases, little to no follow-up care. Instead, we need a full continuum of care from inpatient to intensive outpatient care to long-term oversight and support, with physicians at all stages communicating with each other and to the families of the patient. We do it for other illnesses. To exclude mental illness from this standard of care is nothing short of discrimination.