Acquainted With The Night:
A father finds sparse institutional support in his quest for appropriate treatment for his mentally ill son.
PREFACE: It is no secret that our health care system does a substandard job of diagnosing, treating, and insuring Americans with mental illness. The stigma and complexity of mental illness, and the overwhelming emotional and time-consuming toll it can take on patients and families, inhibit the kind of advocacy for better care that has characterized other illnesses such as breast cancer. Nowhere is the system’s failure more pronounced than among children with mental illness. In understated and straightforward prose, journalist Paul Raeburn shows readers what scores of government reports cannot: the firsthand agony of parenting such children in the context of physicians, hospitals, and schools that are ill-equipped to deal with them appropriately. To balance this stark perspective on the inadequacy of our health care system, we also offer a good-news story, albeit one that is set against a tragic backdrop. Medical humanist Anne Hawkins shows us how a child with AIDS and her family gain solace when players in the health care system are willing to make exceptions to standard practices. By defying usual “paradigms and protocols,” a hospital and its staff attend a child’s death, providing peace and comfort to a family that prefers that she die in the hospital rather than at home.
It’s early evening, Tuesday, May 7, 1996, and I am coming home from my job as an editor at Business Week. As I enter the house I hear my son, Alex, then eleven years old, screaming at his mother. He is being treated with Ritalin by a psychiatrist who diagnosed him with ADHD (attention deficit/hyperactivity disorder) after a single fifteen-minute interview. The Ritalin hasn’t been working, and the psychiatrist has increased the dose. But Alex isn’t reacting well. He’s suddenly much, much worse. I try to talk to him, to calm him, but it doesn’t work. He only becomes angrier. He says he is going to grab a knife from the kitchen and kill himself. “Where can I hide the kitchen knives?” I think to myself. “What about my shaver? The scissors? The box cutter, paint scrapers, and saws in the basement?” I do the only thing I can think of. I call the psychiatrist back to say we are in trouble. We have an emergency on our hands. A woman answers. The doctor is not available, she says. You can call back in the morning. “This is an emergency,” I say. “My son is threatening to kill himself, and I can’t hide all the knives. You’ve got to tell the psychiatrist what’s happening here. We don’t know where else to turn.” Well, perhaps, she says. “I’ll see what I can do.”
We wait, watching Alex, the telephone, and the clock. The psychiatrist has given us a sedative for Alex. I grab one of the pills and a glass of water and try to hand them to Alex, explaining that this will make him feel better. He tries to knock the glass out of my hand. Ten minutes pass, or fifteen, or twenty; it feels like hours. The phone rings. It’s the psychiatrist. I explain what’s happening. “Call the police,” he says. “There is nothing I can do for him.”
“Can you hear him screaming?” I ask. “The police won’t know what to do. You’re his doctor. I need help from you.” If we call the police, they will take him to the county hospital for mentally ill kids. The hospital has just been the focus of a series of newspaper articles pointing out its lack of supervision and the unusually high rate of suicide among its patients. I’m determined to keep Alex out of that place. But if the psychiatrist won’t help, I might not have a choice.
A doctor I’ve met through a friend has told me that if I want to get the proper help for Alex, I’m going to have to fight for it. This seems like the time to start. “If anything happens to Alex,” I tell the psychiatrist, my voice shaking with rage, “I will make it very clear that I talked to you and you refused to help. Alex is out of control. He won’t take the medicine you gave us. You’ve got to do something.”
“Let me see,” he says. “I’ll call you back.” An hour later he calls to say that he thinks he can find a hospital bed for Alex in the morning. We will have to get him to take the sedative or watch him all night. There is nothing he can do in the meantime. Alex, who earlier seemed possessed of inexhaustible energy, begins to tire. I try the sedative once more, and he takes it. A few minutes later, he is asleep.
Adding Insult To Injury
When Alex fell ill, I entered part of the national health care system in which nearly everything is broken. For the parents of children with mental illnesses, there is nowhere to turn. They can’t find emergency psychiatric care, their insurance companies desert them, they can’t find a competent child psychiatrist or can’t afford one if they do, and schools deny any responsibility to help. According to the U.S. Surgeon General’s 1999 report on mental health, about one in five children and adolescents has a psychiatric illness, and some 5 percent (three to four million) have illnesses so serious that the children suffer “extreme functional impairment.” But they are not the only ones who suffer. Millions of parents and brothers and sisters also suffer. Childhood mental illness is an epidemic in this country, one we rarely acknowledge.
The morning after Alex’s crisis, the psychiatrist found Alex a bed in a hospital an hour and a half away from our home. The hospital asked for the name of our insurance company so it could arrange to have the admission precertified for coverage. The insurance company said that it could precertify the admission only if the hospital would explain the reason for the hospitalization and why Alex could not be treated as an outpatient. No one at the hospital had even seen Alex or heard his name until that morning, so the hospital could not possibly provide that information. I made repeated calls to arrange for the psychiatrist to provide the information. Even then, the insurance company would not promise to cover the hospital stay until Alex had been admitted and examined at the hospital. We took a chance that we might be responsible for nearly $2,000 a day in charges ourselves if the insurance company refused to pay. All of this was happening less than two weeks after Alex had been discharged from another psychiatric hospital. He had spent a week there, had been examined by a psychiatrist and a neurologist, and had not been given a diagnosis. No one could say what was wrong.
At the new hospital we waited for a tense half-hour before a hospital staff member escorted us to the teenage unit, where Alex would stay until a bed opened up on the children’s unit. On the way he became increasingly agitated. “Take me home!” he yelled. Two white-coated aides grabbed him. He told them that his mother and I were making up stories about what he’d done. They half-carried him to the quiet room and locked him inside. I could hear Alex banging against the door and the walls. The hospital staff assured us that they would take over and that Alex would be fine, and they pointed his mother and me toward the door. There was nothing we could do, no reason to stay. Get in the car and go home, they said. As we walked down a long empty corridor, Alex’s agonized screams echoed off the walls. I could hear them until we reached the end of the corridor and walked through a large double door. I can hear them still. We finally had taken Alex to a place where he could get care, and their reaction was to lock him up.
When Alex was released, he went back to his elementary school, where the principal, his counselor, and teachers shook their heads. “We’ve never seen a child like this,” they said. “We don’t know what to do.” Every time Alex was involved in a routine violation of school rules, even if he was late to class, his counselor called home and asked what to do. “Do what you have to,” I said. “Just because he’s sick doesn’t mean the rules don’t apply to him. If he deserves detention, give him detention. If he needs a time out in your office, fine.” I couldn’t be there in the classroom to advise them every minute. While Alex was in school, they would have to exercise their judgment. If he had a serious crisis and appeared to be getting sick, then, of course, they should call me. The truth was that the school wanted to get rid of Alex. Of course they had seen many children before with emotional disorders. With 5 percent of kids suffering from severe mental illness, they had to have seen them. Yet they did nothing to help, except to suggest, from time to time, that Alex might be better off if he were sent away somewhere, to a special school.
Alex saw six psychiatrists over three years before I found one who diagnosed him and treated him correctly. The first one saw him for fifteen minutes and prescribed an antidepressant, which appeared to be responsible for a manic episode Alex suffered a couple of days later, sending him to the hospital. The second one talked to Alex for fifteen minutes, again, and prescribed Ritalin. Another manic episode followed, and another hospitalization. Each time Alex was admitted to the hospital, the insurance company allowed him to stay about six to seven days. Each stay included a weekend, at which time the therapists and psychiatrists were not available for treatment. As a result, during each hospitalization he saw a psychiatrist once or twice, saw a therapist or social worker three or four times, and was started on medication, a different one with each hospitalization. The bill for that meager care? About $10,000 for each week’s stay.
Alex was still in crisis, and we were still searching for a diagnosis when, by chance, I discovered that my daughter, Alicia, who was two and a half years younger than Alex, had twice tried to commit suicide, once with a handful of Tylenol tablets and once with Advil. I didn’t know it then, but for weeks she had been attacked by the “popular” girls in the sixth grade. They were spreading the story that Alicia had been sexually involved with dozens of boys in their class. It started when Alicia was spotted kissing one of their boyfriends. “Alicia is a slut,” they were saying. It’s the kind of thing that happens in the sixth grade. The more Alicia protested that she was not a slut, the more the label stuck. Her friends were deserting her. School was becoming unbearable, every day a new trial. The pills were her way out, the only thing she could think of.
Where were her teachers? Didn’t anyone see that Alicia was tense in class or unable to do her work? Maybe I expected too much of them. Alicia’s suicide attempts did not succeed. Once we knew she was in trouble, we began the years-long process, once again, of finding appropriate diagnosis and treatment. But she might have succeeded in her suicide attempts; many children do. Can we not ask teachers to simply let parents know if they suspect there is a problem?
More Action, Fewer Reports
Since those experiences with Alex and Alicia, I have talked to many other parents in similar circumstances. They want to know where to go for help, how to get their children a proper diagnosis and treatment, and how to coerce stingy insurance companies to pay for it. After eight years of involvement with the medical establishment, the insurance industry, schools, and social service agencies, I’m not sure I’ve found the answers. I am a writer and a reporter and have spent most of my career covering science and medicine, yet I am struggling. What is the chance that parents without access to the nation’s top doctors or who don’t know where to go for information will find help? Also, I have the money to pay for care not covered by my insurance company. I’ve spent tens of thousands of dollars for psychiatric care that wasn’t reimbursed. My insurance company has refused to cover the care or would not provide resources of its own.
I have learned a few things from my reporting. As a National Advisory Mental Health Council report concluded in May 2001, “No other illnesses damage so many children so seriously.” Many other reports have come to similar conclusions, including that of the New Freedom Commission on Mental Health. It’s now gathering dust along with scores of other reports. Next year, or the year after, some well-meaning researchers, parents, community advocates, and psychiatrists will gather to produce another report, and they will conclude the same things.
What can we do to change this? For one thing, parents can speak out. This is not only an epidemic, it’s a hidden epidemic. Why? Because we parents are afraid to admit that our children are suffering from mental illnesses. The guilt that parents experience is overwhelming: To the extent that these disorders are genetic, it is our genes that caused them. And to the extent that these disorders are the product of stress at home or at school, we are guilty again—we provided the environment. It’s time for us to overcome our reticence, embarrassment, and guilt. As parents, we must speak out, demanding better care for our children. The AIDS activists and breast cancer coalitions offer us a model. They marched in the streets, carried signs, went to Congress, and demanded action. We need to do the same.
We can ask the schools to do more. The American Academy of Pediatrics has called for school-based mental health services. And without putting undue burden on teachers and schools, we can ask that they alert parents when they suspect that a child might be having an emotional problem. Teachers see thousands of children over the course of their careers. With just the least bit of sensitivity, they should often be able to recognize problems before parents do.
We need to provide psychiatric training for pediatricians and family practitioners, who prescribe most of the antidepressant drugs in this country. A single rotation through psychiatry in medical school a decade or two ago is not enough, and some doctors lack even that. These problems are too important to be left in the hands of doctors whose principal source of information may be drug company sales people. We need more child psychiatrists. There are only 7,000 in the country now. Few children with psychiatric disorders will ever see a child psychiatrist. I’ve asked child psychiatrists why they don’t do a better job recruiting; they say they don’t know. We also need to improve child psychiatrists’ training. There is no excuse for prescribing a potentially dangerous drug on the basis of a short interview, as happened repeatedly with my children. And we need health insurance that provides as much coverage for mental illnesses as it does for any other illness. Congress and the White House have expressed overwhelming support for mental health parity, but congressional leaders do not act on the legislation that would establish it. The reason is that insurance companies and large employers are lobbying ferociously behind the scenes to prevent it.
My kids need help, and so do millions of others. We’ve had enough reports, enough study, enough examination of the problem. It’s time for action.