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.   

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.

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.