by David Brooks
The pharmaceutical industry influences psychiatrists to prescribe psychoactive drugs even for categories of patients in whom the drugs have not been found safe and effective. What should be of greatest concern for Americans is the astonishing rise in the diagnosis and treatment of mental illness in children, sometimes as young as two years old. These children are often treated with drugs that were never approved by the FDA for use in this age group and have serious side effects. The apparent prevalence of “juvenile bipolar disorder” jumped fortyfold between 1993 and 2004, and that of “autism” increased from one in five hundred children to one in ninety over the same decade. Ten percent of ten-year-old boys now take daily stimulants for ADHD—attention deficit hyperactivity disorder—and 500,000 children take antipsychotic drugs.
There seem to be fashions in childhood psychiatric diagnoses, with one disorder giving way to the next. At first, ADHD, manifested by hyperactivity, inattentiveness, and impulsivity usually in school-age children, was the fastest-growing diagnosis. But in the mid-1990s, two highly influential psychiatrists at the Massachusetts General Hospital proposed that many children with ADHD really had bipolar disorder that could sometimes be diagnosed as early as infancy. They proposed that the manic episodes characteristic of bipolar disorder in adults might be manifested in children as irritability. That gave rise to a flood of diagnoses of juvenile bipolar disorder. Eventually this created something of a backlash, and the DSM-V now proposes partly to replace the diagnosis with a brand-new one, called “temper dysregulation disorder with dysphoria,” or TDD, which Allen Frances calls “a new monster.”
One would be hard-pressed to find a two-year-old who is not sometimes irritable, a boy in fifth grade who is not sometimes inattentive, or a girl in middle school who is not anxious. (Imagine what taking a drug that causes obesity would do to such a girl.) Whether such children are labeled as having a mental disorder and treated with prescription drugs depends a lot on who they are and the pressures their parents face. As low-income families experience growing economic hardship, many are finding that applying for Supplemental Security Income (SSI) payments on the basis of mental disability is the only way to survive. It is more generous than welfare, and it virtually ensures that the family will also qualify for Medicaid. According to MIT economics professor David Autor, “This has become the new welfare.” Hospitals and state welfare agencies also have incentives to encourage uninsured families to apply for SSI payments, since hospitals will get paid and states will save money by shifting welfare costs to the federal government.
Growing numbers of for-profit firms specialize in helping poor families apply for SSI benefits. But to qualify nearly always requires that applicants, including children, be taking psychoactive drugs. According to a New York Times story, a Rutgers University study found that children from low-income families are four times as likely as privately insured children to receive antipsychotic medicines.
In December 2006 a four-year-old child named Rebecca Riley died in a small town near Boston from a combination of Clonidine and Depakote, which she had been prescribed, along with Seroquel, to treat “ADHD” and “bipolar disorder”—diagnoses she received when she was two years old. Clonidine was approved by the FDA for treating high blood pressure. Depakote was approved for treating epilepsy and acute mania in bipolar disorder. Seroquel was approved for treating schizophrenia and acute mania. None of the three was approved to treat ADHD or for long-term use in bipolar disorder, and none was approved for children Rebecca’s age. Rebecca’s two older siblings had been given the same diagnoses and were each taking three psychoactive drugs. The parents had obtained SSI benefits for the siblings and for themselves, and were applying for benefits for Rebecca when she died. The family’s total income from SSI was about $30,000 per year.
Whether these drugs should ever have been prescribed for Rebecca in the first place is the crucial question. The FDA approves drugs only for specified uses, and it is illegal for companies to market them for any other purpose—that is, “off-label.” Nevertheless, physicians are permitted to prescribe drugs for any reason they choose, and one of the most lucrative things drug companies can do is persuade physicians to prescribe drugs off-label, despite the law against it. In just the past four years, five firms have admitted to federal charges of illegally marketing psychoactive drugs. AstraZeneca marketed Seroquel off-label for children and the elderly (another vulnerable population, often administered antipsychotics in nursing homes); Pfizer faced similar charges for Geodon (an antipsychotic); Eli Lilly for Zyprexa (an antipsychotic); Bristol-Myers Squibb for Abilify (another antipsychotic); and Forest Labs for Celexa (an antidepressant).
Despite having to pay hundreds of millions of dollars to settle the charges, the companies have probably come out well ahead. The original purpose of permitting doctors to prescribe drugs off-label was to enable them to treat patients on the basis of early scientific reports, without having to wait for FDA approval. But that sensible rationale has become a marketing tool. Because of the subjective nature of psychiatric diagnosis, the ease with which diagnostic boundaries can be expanded, the seriousness of the side effects of psychoactive drugs, and the pervasive influence of their manufacturers, I believe doctors should be prohibited from prescribing psychoactive drugs off-label, just as companies are prohibited from marketing them off-label.
The books by Irving Kirsch, Robert Whitaker, and Daniel Carlat are powerful indictments of the way psychiatry is now practiced. They document the “frenzy” of diagnosis, the overuse of drugs with sometimes devastating side effects, and widespread conflicts of interest. Critics of these books might argue, as Nancy Andreasen implied in her paper on the loss of brain tissue with long-term antipsychotic treatment, that the side effects are the price that must be paid to relieve the suffering caused by mental illness. If we knew that the benefits of psychoactive drugs outweighed their harms, that would be a strong argument, since there is no doubt that many people suffer grievously from mental illness. But as Kirsch, Whitaker, and Carlat argue convincingly, that expectation may be wrong.
At the very least, we need to stop thinking of psychoactive drugs as the best, and often the only, treatment for mental illness or emotional distress. Both psychotherapy and exercise have been shown to be as effective as drugs for depression, and their effects are longer-lasting, but unfortunately, there is no industry to push these alternatives and Americans have come to believe that pills must be more potent. More research is needed to study alternatives to psychoactive drugs, and the results should be included in medical education.
In particular, we need to rethink the care of troubled children. Here the problem is often troubled families in troubled circumstances. Treatment directed at these environmental conditions—such as one-on-one tutoring to help parents cope or afterschool centers for the children—should be studied and compared with drug treatment. In the long run, such alternatives would probably be less expensive. Our reliance on psychoactive drugs, seemingly for all of life’s discontents, tends to close off other options. In view of the risks and questionable long-term effectiveness of drugs, we need to do better. Above all, we should remember the time-honored medical dictum: first, do no harm (primum non nocere).
MIAH ARNOLD
You Owe Me
FROM Michigan Quarterly Review
THE CHILDREN I WRITE WITH DIE, no matter how much I love them, no matter how creative they are, no matter how many poems they have written or how much they want to live. They die of diseases with unpronounceable names, of rhabdomyosarcoma or pilocytic astrocytoma, of cancers rarely heard of in the world at large, of cancers that are often cured once, but then turn up again somewhere else: in their lungs, their stomachs, their sinuses, their bones, their brains. While undergoing their own treatments, my students watch one friend after another lose legs, cough up blood, and enter a hospital room they never come out of again.
The MD Anderson Cancer Center in Houston, Texas, where for over ten years I have taught poetry and pr
ose for Writers in the Schools, is a world-renowned research institution. I have met the sickest children in the world there—children who have been treated already, somewhere else, and who have come for one last experimental treatment, who have one last chance at survival. In this capacity, my students often take part in studies. The treatments they receive are often groundbreaking, innovative ones that, with time, are perfected and standardized. This means their experiences, whether their disease is successfully eradicated or not, serve to build treatment protocols that eventually cure children throughout the world. But only a small percentage of the students I work with in the center’s classrooms live. Less than half, maybe less than a third, and I think less than that: I am just one of the writers in residence there. The numbers aren’t available to me.
As part of my job I write a yearly reflective journal. In the first one, I wrote that while I had been an agnostic before working there, my experiences at MD Anderson made me understand that whether or not there is a Supreme Being, there is an afterlife. My proof was an eleven-year-old boy named Gio, who was a thin, shiny-eyed boy from Mexico. He was simultaneously firmly planted in the world of the living and the world of the hereafter. Up until the day his doctors informed him he wouldn’t live another two months, he had behaved like any other little boy: like he was too cooped up, like he was ready to tear the hospital apart in an adventure game. Once he received news of his impending death, he changed. He wasn’t afraid of dying and he wasn’t angry at the hospital the way he had seemed to be before. It was as if the news of his cancer’s progression opened something inside of him so that he could clearly see into another world, another place he was on his way to. Whatever it was he saw endowed him with an overwhelming generosity of spirit and the most intense humanity I had ever witnessed. I don’t mean he wandered around performing good deeds; it was something more internal. He was overtaken by something like joy. Not a giggling and hysterical one, but a calming joy that infected every room he entered.
Gio’s was the first death I witnessed as a writer, as an outsider who enters into the intimate world of struggling children. I assumed that his death was a template of sorts: this is how the very young die; they become almost holy. Unlike older people, who die scared and uncertain, dying children are endowed with grace. They are able to peek ahead into the world they are about to enter, and so they feel assured it’s there. They know it’s okay to transcend.
For two years after Gio’s death I clung to this vision. But there wasn’t another death like his. He was an exception. Most of the teens I regularly worked with when I started at the hospital died within two years of my meeting them: Oso, a big teddy bear of a boy, a Mexican immigrant who was so sweet it rubbed off on the edgier teens around him; Kile, an angry teen from Guam who had watched his two sisters die of the same cancer that was taking his life; Dolma, a pretty Turkish girl whose family ran out of money to pay for more treatments and who tried to sell books of her poems to raise the money they needed. None of these kids blossomed sweetly into death the way Gio seemed to: Oso was so scared I could barely breathe looking at him, Kile became too furious to speak, and Dolma died with her family in Turkey, always believing a miracle was possible.
How horrible to be able to catalogue the deaths of children in this way. I don’t know what else to do with what I’ve seen. These former students, these young, beautiful friends of mine were just the ones I met in my first weeks at the hospital, and the truth is that I could name at least a dozen more off the top of my head. After that I could read through my catalogue of student work, which I have saved, and come up with countless more. Names of lives I have forgotten because I didn’t teach them first or last.
Working in a classroom whose currency is the eventual death of most of the students runs contrary to the way anybody wants to think about life. People don’t mind being reminded that ten-year-olds die so long as they get to hear the story of that child’s life, so long as it is a story of resilience, a story about a soul raging on long after the funeral because it touched so many people’s lives and changed them for the better. From my current perspective, demanding so much of a dead child is sick. I also understand it is one of the only ways the people left behind have to make sense of these most enormous of losses. However consciously or unconsciously, they want to look in at the life of a young death and say: See, God had pity on these children because in the end, even though this baby died, she knew something we adults don’t comprehend. Her death has meaning that changes my life.
More than a decade into my teaching at the hospital, I no longer say I found faith there. I feel stupid for ever having suggested it. I was, like everybody else, trying to make sense of what is nonsensical. What I can say now is that there is something very special about being one of the people in a dying child’s life. When you know somebody with less than six months to live and that person agrees to spend any moment of it with you at all, the immensity of that generosity does change you, undeniably.
Some children I know for two weeks, some I know for half a decade. That means that I grow much closer to certain patients than to others. I grow too close. I say: If Khalil dies, I won’t be able to continue working here. Since I have known him since he was seven and he’s twelve now, his death is the line over which my presence in this institution cannot cross. Khalil is too full of life. He has written half a stream-of-consciousness novel full of food fights and basketball games, has written 150 poems. He is too crazy to die, he is wacko, he is nuts—or, as my coworker Jeff used to say before he left the job and moved to California to be a social worker, Khalil is crackers, an arrival straight from the cracker factory. Why would the world endow this young boy with such wackiness, with the young Johnny Cash’s lopsided gait and pool-ball eyes, with the right amount of kindness to soothe the youngest children in the room and the right amount of self-assurance not to be intimidated by the presence of the older children, if he were not meant to live? I know that Khalil will be famous one day—a rock star, a basketball hero, a politician who will become the first Arab American president of the United States because he is so beautiful, and he knows suffering, and he will be cured, and I know for sure: he will live long enough to enter a presidential election, he will live long past thirty-five.
The classrooms I work out of, with my coworker Evan, two teachers from the Houston Independent School District, and sometimes volunteers, are hospital rooms that have been fitted with a few computers, textbooks, and a table large enough for about ten people to fit around. There are two classrooms: one for kids younger than twelve, one for teenagers. Usually Evan and I bring the young students together with the older—mixing age groups is useful in writing: the different energies of the different ages of children inspire each other. When we have more than ten students we move into the Pedi-Dome, a giant indoor playground fitted with a basketball hoop, countless balls, and a dozen or so little fire engines and cars for the preschoolers to ride around on. Its roof is painted with stars, there is a yellow brick road painted on the floor, and an entire wall is made up of windows. Even though the view is terrible—we see the top of the building next door—the windows are so big that the room is full of sunlight.
Some kids arrive in class sailing down the hallway on their IV poles, some in wheelchairs or on crutches. Headscarves and baseball caps are the preferred bare-head covering—wigs have been universally proclaimed too itchy and too weird. Some days we have one student, some days we have over a dozen. Writers’ class, as they dub it, is filled with poems, stories, blogging, Scrabble or Taboo game playing, arts and puppetry projects, and This American Life. We enjoy ourselves in Writers’. Tell Michael you’re 3,010 years old, tell Darrian you left your sweet-talking mouth at home so he better get to work, and they’ll giggle. They’ll start making up jokes of their own. They’ll start goading each other.
One of the most meaningful days I had in Writers’ was after a particularly raucous class in which I think we laughed uncontrollably for three or four minutes straight at o
ne point. We collectively got the giggles. Afterward, an old woman stopped me on my way to the elevators.
“I stood outside and listened to your class today,” she said in the halting English that is common in MD Anderson’s corridors. “I just stood outside the door and listened to Umberto laughing, because he doesn’t laugh in the hospital room. He never laughs anymore, and I thought I’d never hear him laughing again,” she said, and she was crying.
I hadn’t realized before then how much the fellowship of kids being around kids changed my students’ personalities. Umberto laughed all the time in Writers’; he always looked forward to it. Our classes are usually jolly. Even when there’s one student who annoys the others, or when students don’t want to work, they all pull together to have a good time. To write, to joke, to be children. But the old woman, Umberto’s grandma, made me see how important it is for the children to not just be in Writers’, but to be in school. To forget, just for a while, the pain, the nausea, the uncertainty, the boredom of hospital life.
Of course, there are sad days. We can go plowing through months and months with a regular group of about ten children, and then something terrible will happen. Then, unimaginably, after six years of living with a cancer that can only be contained by active chemotherapy, after the doctors tell his parents he will die of the chemotherapy if they don’t try a more aggressive treatment, and then, after the doctors fail to successfully remove the almost three hundred tumors in Khalil Al-Almoudi’s stomach in an experimental surgery, Khalil dies. Nine students are left in the classroom, students who have known him as long as they have been hospitalized, because nobody has been in and out of the hospital as long as Khalil.