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Conquering the stigma of getting mental health care


 

Last summer, back when people traveled, I had the pleasure of being in Amsterdam for Pride Week. With a half-million tourists, it was a colorful and costumed display of LGBTQ pride, and both the streets and canals had celebrations with food, drinks, music, and displays beyond anything I could describe.

Dr. Miller is coauthor of “Committed: The Battle Over Involuntary Psychiatric Care” (Baltimore: Johns Hopkins University Press, 2016), and assistant professor of psychiatry and behavioral sciences at Johns Hopkins University, Baltimore.

Dr. Dinah Miller

It was all not that long ago that the American Psychiatric Association classified homosexuality as a psychiatric disorder. Now we have Pride celebrations, and I don’t think twice about mentioning my brother-in-law’s husband, or a female colleague’s wife, nor am I shocked when I hear that the children of my friends are in the process of gender transition. Obviously, the idea that people express both their gender and their sexuality in diverse ways is not accepted by everyone, but we’ve come a long way toward acceptance of people who were once stigmatized and pathologized. I’ll also point out that this shift occurred despite the fact that the gay community was affected by AIDS.

There are many other differences – and illnesses – that our society has come to either accept or sympathize with more graciously over time, and yet both mental illness and substance abuse disorders remain stigmatized and punished. To put it bluntly, we have done a terrible job of making these conditions acceptable illnesses to have, even though we have done a reasonably good job of offering effective treatments. Cancer no longer carries the stigma it once did, even though cancer is a leading cause of death, and the treatments are painful, toxic, and may include the loss of body parts and hair. But if you become ill with cancer, your friends bring casseroles (or perhaps rotisserie chickens), and if you’re hospitalized with bipolar disorder or check into a drug treatment center, you’re more likely to be the recipient of judgment and even scorn.

We have to fix this. We talk about the need to destigmatize mental illness and substance use disorders, and to make these illnesses more on par with other diseases. Maybe that is the wrong call: These disorders sometimes cause people to behave in disruptive, dangerous, and illegal ways that we don’t often see with other illnesses. Frankly psychotic people may be seen as “other,” they may smell bad, they may behave in bizarre ways, and they may be frightening. Their rare acts of violence have been publicized so much that “He’s mentally ill” is accepted by the public as a full explanation for why someone would commit a mass shooting. Depression can cause people to be irritable and unpleasant, and our society equates a lack of motivation with laziness. While people may have sympathy for the suicidal thoughts and feelings of others, completed suicide leaves behind devastated survivors. People with substance use problems may become belligerent or commit crimes to support their addictions. In 2018, over 10,500 people were killed by drivers who were impaired by alcohol. I’m not sure how we destigmatize these conditions, but commercials, billboards, and educational programs aren’t doing it.

Fears around treatment

Perhaps our efforts need to go toward destigmatizing treatment. It is shocking to me how resistant people are to getting help, or having others know they are getting help, when treatment often renders them free from the psychological agony or misbehaviors caused by their condition.

Since I work in an outpatient setting, I see people who have made it beyond the barrier of seeking help. Almost all of my patients are willing to try medications – there is self-selection among those who chose to see a psychiatrist as opposed to another type of psychotherapist. I also believe that direct-to-consumer advertising has helped normalize the use of psychotropic medications.

When it comes to getting a higher level of care, however, the conversations are so much harder. Many of my patients insist they will never be admitted to a psychiatric unit, and when I ask depressed people if they are having suicidal thoughts, some tell me they are afraid to let me know they are for fear I might hospitalize them. This fear of hospitalization is present in people who have never been in a hospital and have only media depictions or their imaginations to go by, but I also see this with patients who have previously been hospitalized and have emerged from their inpatient stays feeling much better. While we know that any type of hospitalization involves a loss of control, unpleasant moments, and sometimes painful procedures, I have never heard anyone say that, if they were to have a second heart attack, they would refuse an admission to the cardiac care unit.

Discussions about treatment for substance use are even more difficult. People with addictions often don’t want to abstain from the substance they are using, and this is an enormous hurdle. Beyond that, they don’t like the labels that come with acknowledging a problem – words like “junkie,” “addict,” “drunk,” and “alcoholic” are hard to escape.

People fear hospitalization for many reasons: They fear losing control, they don’t recognize that they have a problem, or they rationalize their psychosis or substance use as normal. Most of all, they fear what others will think of them and what repercussions this will have for their futures. Patients would rather continue in a state of agony and dysfunction when inpatient treatment would make them better faster. This is nothing short of tragic.

What can we do? The answer is “a lot.” We need to work harder to make the hospital experience a pleasant one for patients. Inpatient units need to be clean, safe places where patients are treated with kindness, dignity, and respect and activities are appropriate, interesting, and promote healing.

Maria, a Maryland attorney, told me about her experience with inpatient treatment. “I experienced my hospitalization as jailing and acutely felt the loss of liberty, especially in the ER, where I was confined to something I recognized from my time visiting incarcerated and detained people as a holding cell, complete with a uniformed guard. I was scared to engage in any kind of meaningful self-advocacy around leaving out of fear for my license to practice law and of lengthening my time as an inpatient. As a result, I found myself concentrating on getting out, and not on getting well. With the benefit of hindsight, I can say now that my hospitalization was a lost opportunity, and the coercive elements were barriers to accessing the treatment that I needed, both at the time and in the years following the hospitalization.”

We have too many policies in place where infractions are met with force, seclusion, and sometimes restraint, and we need to be more flexible with these policies. If a psychiatric unit requires lab work prior to admission and the patient refuses, should force be used in the emergency department if there is nothing to indicate that the patient’s health is in imminent danger? And if the hospital has a policy that all psychiatric patients must disrobe to be examined for preexisting scars or contraband – this is an admission standard for some hospitals, but not others – and the patient refuses, what then? Typically, inpatients are not allowed access to their cell phones or the Internet (for many good reasons), but patients find this very upsetting; might it make sense to allow periods where they can use devices with supervision? Hospitals often forbid smoking, and people with psychiatric disorders may smoke – while it is a wonderful health ideal, is it reasonable to forbid smoking for the course of a hospitalization? Rigid adherence to policies does not always serve our patients well, and it sometimes creates dangerous situations for everyone.

We must work to get questions about psychiatric and substance use disorders removed from any job- or licensure-related forms. There is no reason to believe that people answer these forms truthfully or that including these questions protects the public in any way. What we do know is that people don’t seek help because they, like Maria, are afraid of the consequences of getting care. It doesn’t matter if a surgeon’s abilities are limited because he has episodes of hypoglycemia or past episodes of mania, and the only question on licensing forms should be about current conditions that impair the ability to work. Every district branch of the American Psychiatric Association should be actively speaking with their state professional licensing boards about the harm these questions do.

We need better treatments that have fewer side effects, and we need to acknowledge that, while getting help is the right thing to do, not everyone finds the right treatment with the first attempt and not everyone gets better. Our party line to those who feel suicidal has been “Get Help,” often with a phone number for the National Suicide Prevention Lifeline. While this is an important resource to have readily available, many of the people who die of suicide are already in active treatment. Our party line needs to change to “Get Help, and if it isn’t working, Get Different Help.” We want to be careful that our messaging does not foster a sense of hopelessness in those who have sought care and still suffer.

It’s good to talk about the potential benefits of treatment, but we don’t have enough beds and we don’t have enough mental health clinicians. There are states where psychiatric patients who have committed no crime are held in jail cells while they wait for beds to open – that we allow this is nothing short of a disgrace. The sickest patients with treatment-resistant conditions need access to the best care, and that access should not be limited by finances or networks. And while I’m here: We need our mental health professionals to spend their time working with patients, not computer screens, check boxes, and prior authorization protocols.

Finally, we need to work with the media to show positive and accurate depictions of psychiatric treatment as something that helps. We are still undoing the harm of Nurse Ratched and the depiction of electroconvulsive therapy in the 1975 film “One Flew Over the Cuckoo’s Nest,” and the current focus on mental illness and violence does nothing to help people feel comfortable seeking care.

I’ll end with one more thought from Maria: “Mental health professionals need to talk about hospitalization up front, no matter how uncomfortable, and encourage patients to think about hospitalization as a treatment option on a continuum before it is needed, so they are not approaching hospitalization as an abstract concept, often with a lot of fear and stigma attached to it, but rather as an option that they might explore in a fact-based way.”

Dr. Miller is coauthor with Annette Hanson, MD, of “Committed: The Battle Over Involuntary Psychiatric Care” (Baltimore: Johns Hopkins University, 2016). She has a private practice and is assistant professor of psychiatry and behavioral sciences at Johns Hopkins University, both in Baltimore. She reported having nothing to disclose.

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