By BENEDICT CAREYDEC. 28, 2015
Frank was suicidal at 17. Two years later he attends college makes his own treatment decisions.CreditElizabeth D. Herman for The New York Times
SAN FRANCISCO — The idea was to go out in an emotional swan dive, a lunge for the afterlife that would stretch his 17-year-old imagination. He settled on a plan and shared the details with a Facebook friend: He would drop DMT, a powerful psychedelic, and then cut his throat.
“Everyone was telling me what I could and couldn’t do — doctors, my parents,” said Frank, now a 19-year-old college student. “I was going to hurt myself, to show people, ‘Look, I am still in control of my life.’”
And so, in time, he was. Frank, who eight months earlier had received a diagnosis of psychosis, the signature symptom of schizophrenia, and had been in and out of the hospital, gradually learned to take charge of his own recovery, in a new approach to treatment for people experiencing a first psychotic “break” with reality.
At a time when lawmakers in Washington are debating large-scale reforms to the mental health care system, analysts are carefully watching a handful of new first-break programs like the one that treated Frank in New York as a way to potentially ease the cycle of hospitalization and lifetime disability that afflict so many mentally ill people.
Tia Dole, program director of the OnTrackNY site at the Mental Health Association of Westchester, runs a program that more readily seeks input from psychosis patients.CreditTodd Heisler/The New York Times
More than two million people in the United States have received a diagnosis of schizophrenia. Most are consigned to whatever treatment is available amid a hodgepodge of programs that often focus on antipsychotic drugs to blunt delusions and paranoia — medicines that can come with side effects so debilitating that many patients go off them and end up in a loop of hospitalization and despair.
But over the past several years, a number of states have set up programs with a different approach, emphasizing supportive services, like sustained one-on-one therapy, school and work assistance, and family education, as well as medication. The therapists work to engage each patient as an equal partner in decisions — including about medication dosage, to make it as tolerable as possible.
In a landmark study published this fall, government-backed researchers reported that after two years, people who had this combined package were doing better on a variety of measures than those who received treatment as usual. The difference was modest but notable. And, significantly, the participants continued to receive care for six months longer on average.
Frank, who asked that his last name not be used to protect his privacy, came to trust his therapist in the program enough that he told her of his suicide plan — and she foiled it, with help from his mother.
He quit talking to people the summer before his junior year in high school, and that decision drove the once social young man — a skateboarder and an accompliished student — so deeply into his own head that he seemed beyond reach.
“I was hearing voices, and every conversation I had, the voices were asking, ‘What is this person thinking?’ They think I’m a loser. They’re making fun of me,” Frank said recently over pizza near his apartment in the San Francisco Bay Area. Dressed in a light jacket and khakis, he was watchful, low-key and engaged, as if discussing something with a professor after class. “The real voices would merge with the ones in my head, and there was just too much noise. I had to shut it down.”
A Downward Spiral
He told no one what was happening. Not his parents, not his friends. He simply retreated; in his spare time, he would hole up in his bedroom in his family’s colonial-style house outside New York City, the shades down, the door locked, the covers pulled over his head, his face lost in the dead blue glow of a laptop.
“I thought at first he was just being an obstinate teenager,” his father said.
His best friend, Perry, said he got Frank out of the house one morning, and the two went to a local bagel place. “He just told me: ‘Hey man, it’s over, I don’t want to see you anymore,’” said Perry, who asked that his last name not be used, to protect Frank. “He was so calm when he said it, it freaked me out.”
Frank’s parents had sent their son to specialists before and received diagnoses of depression and attention deficit disorder. But this was something much more ominous, his mother said in an interview recently in the sunroom of their home. The walls in the formal living room were a gallery of proud family memories. She and Frank’s father asked that the family’s identity be protected so their son would have a chance at a normal life in a country where psychosis is often stigmatized. But they spoke in detail about Frank’s experience to give other families hope.
Tamara Sale, director of care for Early Assessment and Support Alliance in Oregon, said that about 60 percent of those who received care through the program are working or in school.CreditRuth Fremson/The New York Times
Once a model student at his suburban high school, Frank suddenly began smoking marijuana daily, skipping most of his classes and pacing the school’s hallways in a trance. His mother read notes in the margins of one of his notebooks — rambling, self-attacking — and found them so disturbing that she called 911.
The police showed up and escorted Frank to a hospital. After being on heavy medication for several weeks, he came home.
In the months that followed, he landed in the hospital yet again. But he also, finally, received a diagnosis that made sense to his parents: psychosis, the signature hallucinations and delusions of schizophrenia.
“We were going through this revolving door,” his mother said. “He’d have a crisis, then land in the hospital, then come home and go off his medication and end up right back in the hospital.” She and her husband contacted every major medical center in the New York City area, looking for treatment programs, but those available had such strict criteria — for instance, bipolar disorder with psychotic features and substance abuse — that their son didn’t qualify for any of them.
Finally, one doctor suggested a new program called OnTrackNY, developed specifically for people who had had their first psychotic break within the past two years.
It was fall 2013, about a year after Frank’s symptoms were identified as psychosis. This time, he qualified; he was one of the first clients accepted.
On that first day, he and his mother sat across from a therapist, and she explained his situation. Frank stared into space. Then the therapist, Tia Dole, program director of the OnTrackNY site at the Mental Health Association of Westchester, did something unexpected. “I asked his mom to leave the room,” Dr. Dole said.
Exiled to the waiting room, Frank’s mother half-expected him to storm out, or the therapist to give up. Neither happened. A few weekly sessions later, she heard something absent for years.
“Laughing,” she said. “He wouldn’t say a word to me in the car, at home, even passing in the hallway. And now he’s in there laughing?”
The philosophy behind OnTrackNY and similar programs is rooted in two principles. One is that people are most likely to benefit when supportive services are available as a complete package: namely, a lasting relationship with a therapist; family counseling; school and work assistance; group therapy; and medication management, as in a system for adjusting doses so they are tolerable.
Most treatment centers offer some but not all of these elements, based in part on what is covered by insurance. Work and school support are usually not covered, for instance.
Belle, 22, has been able to paint again since seeing EASA therapists. She said of her treatment, “I felt like I was in control.” The second principle is the one that appealed so strongly to Frank: that people are more likely to agree to and continue treatment if they help determine its direction.
This idea is hardly new; therapists were engaging psychotic patients as collaborators a century ago, and many clinicians still do. But over the years, collaboration has taken a back seat to compliance in a system focused mainly on keeping people stabilized on antipsychotic drugs.
“The first psychiatrist I saw, he was leading the conversation, telling me what to do,” said Belle, 22, a student who has stabilized in a similar program in Oregon called EASA, or Early Assessment and Support Alliance. She asked that her last name not be used, to protect her privacy.
By contrast, she said, EASA therapists asked her what her goals were and what she wanted to do: “I felt like I was in control.”
Dr. Lisa Dixon of the New York State Psychiatric Institute, who directs OnTrackNY, puts it this way: “We wanted to reinvent treatment so that it was something people actually want.”
An Expanding Concept
At least five states have such coordinated-services programs established, and the programs are expanding quickly. EASA began with five centers and in 2007 opened centers in counties throughout the state. The New York program began in 2013, with four locations around New York City, and has since added a half-dozen more statewide. The programs rely on a combination of state funds and insurance reimbursement, and 32 states have begun using block grants set aside by Congress in 2014 to fund such programs.
How much difference those programs will make is not clear. For example, the government-backed study released this fall found that the new approach had not reduced hospitalizations, a big driver of expenses.
But at last count, about 80 percent of the people who enrolled in OnTrackNY 18 months ago have remained in the program. Most of them were still in school or working, according to Dr. Dixon, who is also a professor of psychiatry at Columbia. About 60 percent of those who received care through EASA, the longer-running Oregon program, are working or in school, according to Tamara Sale, the program’s director of care.
Those are viewed as very good numbers; studies suggest that young people in the first stages of treatment drop out at high rates, from 30 percent to more than 50 percent in the first year.
The reasons for the improvement, some experts say, probably include increased family participation, more collaboration in medication decisions, and the fact that, unlike their counterparts in many community clinics, the new programs’ staffers track down people who miss appointments.
The reason he opened up to Dr. Dole, Frank said, was that “at the end of the day, she let me have my delusions,” he said.
“For instance, I told her once how every time I went outside, I was sure people were taking video of me on their phones and posting it online.”
“She would listen and listen, and let me finish and then say, ‘How sure are you that’s true?’”
Not so sure, he would say.
In this way, Dr. Dole simultaneously took the delusions seriously and helped Frank identify them as unreliable. “I don’t even call them delusions,” she said. “I call them beliefs.”
OnTrackNY also advised Frank’s parents on how to manage their son when he was in the grip of a delusion at home. “She told us to focus on the emotion he was experiencing and not so much on what he was saying, his accusations, whatever it was,” Frank’s mother said. “So, for instance, we’d say, ‘I can see you’re angry, how can I help you?’”
Like many people with psychosis, Frank strongly resisted taking antipsychotic medication. He had gained 20 pounds on one of the drugs, and another had made it hard for him to form thoughts. Both are common side effects of such medications.
It was during one unmedicated period that Frank developed his elaborate suicide plan. He was serious enough to promise an equally troubled Facebook friend that he was on the brink of acting. But he also informed Dr. Dole, almost casually, as he recalls it — and, this time, she was the one who had him hospitalized.
“I never would have said anything if I didn’t trust her, so yeah, I felt betrayed when she had me taken away,” Frank said. “But I am still here, thanks to her.”
Dr. Dole used that art of persistent suggestion to persuade Frank to try medication again, reminding him that the two of them, with the help of the program’s psychiatrist, would work out what dosage — and which drug — was best.
If he did not like a medication, she told him, he could quit. If he preferred very low doses — enough to ease the voices but not quiet them, for instance — he could do that, too.
Many people quit the drugs, not only because of the side effects but because they do not think the medicine is making much difference. These new programs address this doubt by having the patient and at least one family member keep a careful diary of behavior change as a dosage is gradually reduced. The diaries provide a clear record from multiple points of view.
Frank also met with a social worker at the program, Jim Coyle, who helped arrange for him to continue his studies at home while trying to cope with the psychosis.
In spring 2014, about six months into the program and back home from the hospital, Frank began speaking to his parents again. He and his father talked about the saxophonist John Coltrane and played albums together. He hung out with his mother in the kitchen, helping her cook. And then, one night, as his parents were going to sleep, Frank came in and sat on their bed.
He had a plan, he said. He wanted to go to college. In California.
“My husband and I turned to each other and said, ‘We can’t even get him out of his room, how are we going to get him to California?” his mother recalled.
“After everything that happened,” Frank said, “I didn’t think they’d take it seriously.”
On His Own a Coast Away
But they did. He is in his second year now at college in the Bay Area, taking a light load of three classes and conducting his own course, of sorts, in self-treatment. He regularly visits a clinic here, where he receives medication — an antidepressant, as well as an antipsychotic drug. From a low-dosage beginning, he has decided he needs more. Until recently, he also attended group therapy.
“I know what I need now,” he said over lunch on a recent Friday.
That first year away, he said, he was off medication and began to have a creeping feeling that the housing complex where he lived was the center of a prostitution ring run by the Yakuza, a Japanese crime syndicate. “The Yakuza,” he said, shaking his head. “That’s when I knew I better go back on the medication.”
He’s in regular touch with his parents, he said, and has reconnected with his friend Perry back in New York, and plans to become a psychologist to help others like himself. He has also made some new friends at college. They occasionally ask him where he has been after a psychiatric appointment.
He does not feel the need to tell them. “I don’t think of myself as somebody who is mentally ill, you know?” he said. “I think of myself as a regular person.”