That’s how many times Nancy Johns says she has been in and out of Dorothea Dix Hospital in Raleigh. Eighty-eight times in twenty years.
In 1989, Johns got a concussion while she was working as a paramedic in her 20s. Then she started hearing voices. They were commanding voices, telling her to hurt herself.
“They would say I was not worthy of anything,” Johns said. “Not worthy of love. Not worthy of being. That I deserved to be dead.”
Depression followed. And then the cutting.
Doctors diagnosed her with schizoaffective disorder. Johns suffers from a combination of schizophrenia and bipolar disorder.
She’s been on disability since the accident and receives Medicare payments to cover her health care expenses. But even with government benefits, she doesn’t always receive the care she needs.
For Johns, moving between the hospital and the community has become a familiar cycle.
She knows she could relapse at any time.
But for Johns and other North Carolina residents, admission to Dorothea Dix is no longer an option. The 154-year-old state psychiatric hospital stopped accepting new patients December 3 in preparation for the hospital’s planned closing on December 23. Only a forensic unit and a children’s outpatient program will remain at the hospital.
Former Dix patients will be directed to the state’s three other hospitals, Central Regional, Broughton and Cherry.
If Johns suffers a relapse, she’ll be sent to Central Regional in Butner. She’s afraid of going to a new hospital because Dorothea Dix is all she’s ever known. After 88 visits to Dix, Johns feels like she knows the staff there.
A familiar story
Johns’ story is familiar to many suffering from chronic and acute mental illness: a cycle of crisis and hospitalization.
The state’s 2001 mental health care reform law was designed to fix this problem. Under the reform system, patients suffering from acute illness receive short-term care near their homes and families. Long-term care patients are still directed toward state psychiatric hospitals.
To drive care into the community, state health officials reduced the number of mental health hospital beds while simultaneously overhauling the community health provider system.
The overhaul has made it difficult for patients like Johns to get services from local mental health providers called critical access behavioral health agencies. When a psychiatric crisis occurs, many patients have no choice but to seek treatment at nearby emergency rooms.
The result has been a growth in the number of mentally ill patients treated in emergency rooms, according to a study by the National Alliance on Mental Illness of Wake County. That growth strains patients and care providers because emergency room physicians and nurses are often ill-equipped to handle the mentally ill, said Jeff Strickler, the clinical director of emergency services for UNC Hospitals.
“In the past, a patients would come in, you sedate them and get them calmed down,” Strickler said. “Now you’ve got them for days. We don’t have enough tools in our toolbox to manage some of these patients.”
Emergency room physicians are trained to make split-second decisions to stabilize a crisis and then move on. This is true in most emergency rooms, Strickler said.
But on top of the normal pressures of emergency room medicine, rural hospitals frequently have few resources to provide care to the mentally ill. Some doctors are forced to sedate patients rather than treat them with psychotropic drugs.
“This is not a failure of the emergency room,” Strickler said. “This is a failure of the mental health system in the country.”
During the course of her illness, Johns has made hundreds of emergency room visits.
“They didn’t know how to handle mental illness,” Johns said.
Johns said that when she visited the emergency room, doctors increased her medications to levels that controlled her crisis but left her feeling empty inside. On other occasions, Johns said she felt as though she was placed in a room and forgotten.
The 87th time was different
But even at Dorothea Dix, doctors struggled to care for Johns. Sometimes the drugs they gave her left Johns in a numbed state that she calls the “Thorazine shuffle.”
“They’d put me on Ativan, Thorazine, Haldol just to calm me down,” she said. “And I’d be out of it. Not knowing what’s going on. Being blank.”
That was before she met Dr. James Wells. Wells was the leading psychiatrist at the hospital’s Female Continuing Care Unit, which specialized in treating patients with multiple hospitalizations. The unit closed in late November.
Wells asked Johns if she wanted to try receiving long-term care at his unit. For Johns, treatment in the Female Care Unit was unlike any of her 87 other hospital admissions.
“I learned so much about myself,” Johns said. “It’s not all drugs. There’s other things — like knowing yourself.”
Under Wells’ guidance, violent activity decreased significantly in the Female Continuing Care Unit. He and the staff stressed empathy and listened to their patients’ concerns. He allowed patients to listen to their own music with personal CD players.
Many of the other doctors at Dix practiced strict care regimens, Johns said. They would ask the same questions and check off the same points on a clipboard.
“Dr. Wells — he cared,” she said. “He treated every patient differently. Everyone was unique.”
Johns doesn’t believe the same kind of care she found in the unit will be duplicated at Central Regional.
Many mentally ill patients share Johns’ worries, said Debra Dihoff, executive director of the N.C. chapter of the National Alliance on Mental Illness.
“There’s so much rich and new that’s going on,” she said. “But the overwhelming feeling is chaos and frustration.”
But Dihoff said that more than ever before, mentally ill patients are benefiting from evidence-based programs in and out of state hospitals. Dr. Wells plans to re-enter private practice, but the majority of Dix’s staff will relocate to Central Regional’s modern facility.
“It’s a beautiful new hospital and much more state-of-the art than Dix,” she said. “There’s so many allegiances to Dix, but most of the other states would be dancing in the streets to get Central Regional.”
Ready for the community
At the Female Continuing Care Center at Dix, Wells emphasized transitioning his patients from the hospital back into the community, Johns said. Because she was in long-term care, the transitioning process unfolded over time. Her treatment team gave her passes to walk around the hospital when they felt she was ready.
She started with a half-hour pass.
Soon, Johns was navigating Raleigh’s bus system with a day pass in her pocket and a friend at her side. Other patients were encouraged to look for work. Social workers even helped Johns look for her apartment.
“They didn’t just dump me out,” Johns said. “They did everything they could to get me ready for the community.”
Tammy Strickland, program manager for care coordination for Wake County, said that process is standard at Dix. Discharge planning begins the moment the patient checks into the hospital, she said. Special social workers called hospital liaisons work directly with patients to transition them from the hospital back into the community.
“They try to address any kind of barrier that they might have,” Strickland said.
Every patient leaves with medication and a scheduled follow-up appointment for within seven days of discharge, Strickland said. If patients don’t have transportation to the appointments, social workers help with that, too.
For Chris Marsh’s sister, Raleigh was a good place to learn how to live independently. Marsh’s sister has schizophrenia and bipolar disorder and is being transitioned to leave the hospital. Like Johns, she has been hospitalized repeatedly and has benefited from Wells’ long-term care unit at Dix.
Marsh had just about given up on his sister living independently again, he said. Just a few weeks before the long-term unit closed, Marsh’s sister had begun transitioning into the community.
But with Dix’s closing, that progress could be in jeopardy, Marsh said.
“If she goes to Butner [Central Regional], she might never come out because she doesn’t have the transition care,” Marsh said.
In a city like Raleigh, Marsh said, transitioning back into the community is easier with public transportation, concentrated services and nearby job opportunities.
No money, poor grades
After assessing North Carolina’s mental health system, The National Alliance on Mental Illness awarded the state in 2009 with a D letter grade.
The organization evaluated the state based on the number of programs delivering evidence-based practices, the length of emergency room waiting times, and the number of psychiatric beds in the state.
It’s been increasingly difficult for the mentally ill to get services, said Dr. Wells, the Dorothea Dix psychiatrist.
The state is trying to improve how patients receive services, but it will take time, said N.C. Rep. Verla Insko, D-Orange, who sits on the General Assembly’s mental health committee and was instrumental in writing the reform law.
“They didn’t get treatment when they needed it and they didn’t have continuity of care,” Insko said. “Access was a problem in the old system. It’s a problem in the new system.”
A few state legislators believe the answer to the problem of care delivery will be reduced if Dix is kept open. Lanier Cansler, Secretary of the Department of Health and Human Servies, estimates closing Dix will save $16.9 million. And given the state’s $3-4 billion budget shortfall, closing Dix is a necessity, Insko said.
“If we had the money we would probably keep it open for another two years,” she said. “The money’s just not there.”
With regular medication, the voices in Johns’ head have subdued. She has been living independently since October in a spare, dark apartment on the outskirts of Raleigh.
Now that Johns is back in the community, she’s afraid of stepping backward into a place where she can’t get help.
“There’s a lot on me,” Johns said. “I’m just praying day-to-day that the good Lord gets me through the day.”