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Mr. Seidenberg, who lives in Great Falls, Virginia, was formerly deputy director for management and program operations, Division of AIDS and Health and Behavior Research, National Institute of Mental Health. He also served as the institute's deputy executive officer from 1985 to 1998. Send correspondence to him at firstname.lastname@example.org. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.
My 24-year-old son Noah lost his battle with chronic and severe mental illness and co-occurring substance use disorders on Friday, July 28, 2006. He overdosed on methadone and cocaine. In the decade before he died, he had received an array of intensive services. I believe he truly wanted to get better, but his behavior often conflicted with that desire.
A bitter irony of the heartbreak of Noah's life and death is that I spent most of my professional career as a senior manager for the National Institute of Mental Health, administering research and programs dedicated to improving the lives of people like Noah. But all of my insider knowledge and contacts did little to alleviate my son's suffering and, ultimately, couldn't save his life.
Along with having feelings of grief, I find myself questioning the mental health treatment system and the systemic obstacles to treating co-occurring mental and substance use disorders. I wonder about the competence of clinicians who were not equipped to make a differential diagnosis and then treat Noah with the proper level of intensity and integration of services. I question the lack of coordination and follow-up, the multiple prescriptions that seemed virtually unmonitored, and the inability of so many practitioners to recognize the implications of the interplay of substance abuse and mental illness.
It is impossible to know whether optimal treatment could have helped my son. But it seems clear to me that the hopelessly fragmented system that Noah encountered on his stumbling and futile path to mental health all but guaranteed failure. Consider that in the last 36 months of his life:
• Noah was hospitalized 19 times in six states. He was an inpatient for 120 days.
• Noah made 326 outpatient visits to an array of health care providers in numerous fields, including mental health, drug and alcohol abuse, and family and internal medicine. Eighty-four of the visits were to emergency rooms or urgent care facilities.
• Noah filled 245 prescriptions in outpatient pharmacies. Insurance records show prescriptions for almost 40 different psychotropic medications. In the last six months of his life, he filled a prescription every 3.5 days.
• Noah was diagnosed as having 22 different DSM-IV disorders.
Noah had accomplishments in his short life and gave his mother and me moments of pride. But from early adolescence he displayed troubling symptoms, manifesting in the antisocial and unacceptable behaviors that are so often the hallmarks of mental illness among young people. When he was 14, he was sexually abused over a period of time by a trusted and admired inline skating coach. That coach is now imprisoned for what he did. But Noah is dead, and I think this devastating chain of events was the trigger that sent Noah into the excruciating decade-long spiral that ended in his death.
The first signs of trouble manifested as separation anxiety—as a younger boy, he would call home in the middle of the night during a sleepover at a friend's, unable to handle an entire night away from home. Several therapists he saw during high school diagnosed depression. In his later teens, substance abuse and addiction found their way into the diagnostic array. The mounting list of diagnoses would include bipolar disorder, posttraumatic stress disorder, attention-deficit disorder, panic disorder, mania, neurotic depression, adjustment reaction disorder, and opioid dependence.
Along with diagnoses came prescriptions. Noah used—and abused—a horrifyingly comprehensive panoply of psychotropic drugs, including antidepressants, pain medications (synthetic narcotics), methadone and other medications for addiction control, sleep medications and hypnotics, antianxiety medications and mood stabilizers (including antiseizure medications), stimulants for attention-deficit hyperactivity disorder, nonbenzodiazepine anxiolytics, and numerous antipsychotic agents—more than three dozen different drugs in all. He said that benzodiazepines were the drugs that helped him most, but they triggered paradoxical aggression and violence.
Noah also used marijuana and alcohol from a young age and progressed to crack cocaine and opioids. Did mental illness cause illicit drug use or did prolonged use of street drugs induce his psychoses? We will never know. What we do know is that Noah was all too agonizingly aware of his illness. "I can never feel normal," he once told his girlfriend, Sarah. "I never feel normal no matter what I do. It is a constant struggle to feel okay—even just okay—very rarely do I feel good."
Yes, Noah did have a girlfriend, and the fact that he managed to sustain that relationship over several years was a hopeful sign that he had the potential to function in the world. But the relationship was also battered by his illnesses. Likewise, his college career—he attended the University of Arizona in Tucson and George Mason University, located closer to our northern Virginia home. Noah made it to his senior year, earned As and Bs, and sometimes made dean's list. But he couldn't make it to graduation, derailed by his mental disorders and escalating drug use.
Noah's goal was a career in graphic arts. He was talented—expressive in metal work, woodblock prints, digital design, and complex collages. But professionally he didn't get much beyond designing business cards for one of his psychologists. Instead, he worked as a waiter or in a car wash.
Noah's dramatic and disturbing mood swings from seemingly normal functioning to explosive manic attacks started when he was 16 years old. He inflicted thousands of dollars of damage to our residence, and his threatening words and actions were reason enough to call the police and have him restrained. Almost all such attacks ended in bodily injury and Noah's hospitalization.
Noah saw therapists for years—psychiatrists, psychologists, social workers, addiction counselors, the whole gamut. He didn't like group therapy and couldn't complete inpatient or residential treatment programs, although we tried quite a few all over the country. Poor compliance with medication and treatment, coupled with a growing dependence on illicit drugs, brought out the worst in Noah. He wasn't the same boy who, when drug-free, aspired to finish college, get married, and raise a family. He believed he could solve his problems by himself. What a mistake that turned out to be.
In the months since Noah's death, I have pored through the documentation of his life—the voluminous files of medical and insurance records that provide an insight into Noah's sad days. One thing that is evident is the tremendous burden that co-occurring disorders exert on the health care system. Another is the severity of my son's illnesses, attested by the intensity of mental health and addiction services he used during the last three years of his life.
Noah and those who loved him knew he had a problem, and he was intensely involved in seeking professional help. So why did he die? From everything we know, comorbidity of mental illness and substance use disorders is associated with poor outcomes, especially with onset at a young age. What could have saved him? His mother said after his death, "I could not save Noah's life; no one could, except Noah. He tried and tried, but this horrendous disease won out. He was suffering so much, like a person in the end stages of cancer. He was very ill."
Noah's illness might be one of those cases where whatever you do is not enough. Illicit drugs working in tandem with bipolar disorder must have at last disrupted Noah's brain circuitry. In his last months, his neurocognition was suffering and his psychotic behavior was worsening. He became increasingly desperate and frightened. He pounded my best friend's vintage car with a sledge hammer. Driving home from Florida, he stopped in Richmond, flagged down a police cruiser, and pleaded with the officer to shoot him. Brought to a Richmond hospital, he tried to hang himself in the emergency room.
The last time I spoke with Noah, I gave him $20 to pay for his methadone. He asked me for more money and I said no. Later in the day I got a call from the car wash where he worked; he had fallen asleep and was unresponsive. I arrived to find him with dilated pupils, bluish fingernails, and a faint pulse and heartbeat—or did I imagine that? But he was not responsive to shouting his name, slapping his face, pouring water on his head. "Call 911," I shouted, but the paramedics found Noah without heartbeat or respiration, unresponsive to CPR.
I have no solutions, but perhaps some insights. The health care delivery system in the United States has evolved into an acute care response model. Doctor shopping and pharmacy shopping to maximize access to medications are rampant. Hospital stays for psychiatric and substance use disorders often provide no more than a safe haven for detoxification and stabilization. Continuity of care in outpatient settings is absent or inadequate. Mental health practitioners and substance abuse counselors fight subtle turf wars and don't know enough about each other's discipline. Integrated approaches—especially to pharmacology—are hard to find.
Research should explore the gaps in our understanding of the causality of some mental illnesses. Why is prevention so difficult? Why are substance use disorders so intertwined with psychiatric disorders? Better recognition and management of bipolar disorder, a chronic and costly condition, are needed. Better—and better-enforced—strategies are essential to address doctor shopping and to reduce nonmedical use of controlled substances. And such strategies must cross state lines. Online pharmacies must be monitored.
I lost a beautiful son to an ugly disease. My memories are bittersweet. Noah gave me joy when he smiled and was in control, and I am able to cherish those moments. But only with a lot of luck—luck that Noah (and I) couldn't seem to find—can the co-occurring brain diseases Noah suffered from be neutralized.
The author thanks freelance medical writer Randi Henderson for her editorial assistance in helping him present this tribute to his son, which was excerpted from a longer manuscript.
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