Son Who Hears Voices Finds Health Care Fatally Dysfunctional
Minutes before 11 p.m. on Oct. 18, 2010, two strangers sped toward a shared fate on a highway outside Seattle.
Behind the wheel of a silver Subaru wagon was Adam Knapp, a 30-year-old schizophrenic 2,400 miles from home. Eighteen days earlier, he had slit his wrists and swallowed two bottles of pills in a suicide attempt. Three hospitals admitted him afterward. None kept him, and now he had taken off in a car alone.
“He wasn’t ready to come home,” said his mother, Marcia Knapp, who wanted Adam to stay hospitalized.
Elisa Mefi, 31, was driving a black Ford Explorer. The unemployed medical clerk had just picked up her younger sister from work. They laughed and talked about new hairstyles until they saw the headlights of Adam’s car coming straight at them.
Adam had U-turned directly into oncoming traffic. On impact with his car, Elisa’s side of the Explorer crumbled like a candy wrapper. Once his car came to a halt, Adam climbed out, jumped over a guardrail into traffic and was hit by five vehicles, police reports say. He died at the scene. Elisa succumbed to injuries three weeks later.
Their deaths lay bare continuing failures of the U.S. health care system in treating the seriously mentally ill, and in protecting the public from their disturbed behavior. Adam’s parents say he died because a series of hospitals sent him home too soon in the turbulent final months of his life.
‘You Killed My Son’
The Knapps, of Dublin, Ohio, say the unwillingness of his last hospital to seek court-ordered, forced medication for him also led to his demise.
At Midway Airport in Chicago, the couple was changing planes on their way to find Adam when they received a cellphone message from his sobbing sister with the news of his death. Finding a quiet spot, Marcia phoned the Ohio State University Medical Center, which had last seen him.
“You killed my son,” Marcia told the nurse who answered the phone.
Decades after powerful antipsychotic drugs emptied many state psychiatric hospitals, fewer than 46,000 of the seriously mentally ill remain institutionalized in long-term care, versus 559,000 in 1955.
The decline was made possible by the discovery of one powerful antipsychotic drug after another -- first, Haldol and Thorazine, and more recently, Abilify, Seroquel and Zyprexa, a trio in widespread use with $18 billion in annual sales.
Less noticed than the drug advances are statistics showing the diminishment of acute care for the mentally ill -- the kind of hospitalizations sought during times of crisis. The duration of these stays has dropped to 7.8 days in 2009, the last year of available data, from 12.8 days in 1993. Adam’s final stay, at Ohio State University Medical Center in Columbus, lasted a week.
“We were deeply saddened by Adam’s death and wish to express our sorrow and sincere condolences to his family for their loss,” the hospital said in a statement. Doctors declined to speak about the particulars of Adam’s care, according to David Crawford, a spokesman.
Although stays of all kinds have been shortened by insurance plans trying to manage care, the 39 percent decline for mental illness is one of the sharpest -- more than the 29 percent drop for coronary artery disease or the 28 percent shortening for colon cancer, according to the U.S. Agency for Healthcare Quality and Research.
Doctors now have about a week to assess the efficacy of antipsychotics that may take two weeks to show results, said Russell Margolis, director of the Johns Hopkins University schizophrenia program.
“Those things don’t add up,” he said.
The result: greater relapse and more patients released prematurely doing harm to themselves and others, according to 20 psychiatric experts interviewed by Bloomberg News. A 2008 Canadian report linked shorter stays to higher rates of readmission for schizophrenics, and a 2005 study of U.S. Department of Veteran Affairs hospital psychiatric patients connected them to higher suicide rates.
“Patients under these conditions get into more trouble, become more gravely ill, and some die,” said Ira Glick, chief of the Schizophrenia Clinic at the Stanford University School of Medicine.
They are also harming people in the population at large, according to E. Fuller Torrey, a Chevy Chase, Maryland, psychiatrist, who called for more forced medication for schizophrenics in his 2008 book, “The Insanity Offense.”
Gabrielle Giffords Case
Torrey said he has news and Internet accounts of over 5,000 incidents of violence linked to mental illness since 1998. One recent addition to his files was Jared Lee Loughner, who shot and killed six and injured 13 in Tucson last year, including U.S. Representative Gabrielle Giffords. Court psychiatrists have diagnosed Loughner as schizophrenic.
There were 104,617 U.S. deaths due to mental illness in 2008 compared to 42,128 in 1999, according to the National Center for Health Statistics. Almost all of the increase was tied to dementia and conditions of old age. Deaths from schizophrenia, bipolar disorder and severe depression -- three forms of serious mental illness -- didn’t rise and accounted for less than 1 percent of the total.
One reason it is so low is that coroners and doctors misclassify and miss “a lot” of deaths from mental illness, according to Robert Anderson, the chief of mortality statistics at the center, who attributes that to misunderstanding how the diseases cause death, and efforts to avoid stigma for the deceased and loved ones. Schizophrenia wasn’t named as the reason for Adam’s death in his autopsy report, which stuck to describing the trauma from his physical injuries.
The ‘Gentle Giant’
Adam Knapp, who was born in 1979, grew up in Munroe Falls, a town of 5,000 north of Akron, Ohio. His father, Dan, 58, was a mortgage banker and his mother, 54, was an office manager and receptionist. He had a younger brother, Jason, and an older stepsister, Melissa.
Adam showed no early signs of a tortured mind. He was athletic, mischievous and did well in school. As a boy on the swing set, he imagined himself a swashbuckling Indiana Jones. He hid the Lima beans from his dinner plate under the couch. He climbed a favorite tree to listen to the birds, watch the seeds float to the ground, and “let the locusts lull me into a state of presence,” he wrote in an unsent letter found by his mother after he died.
At Stow-Munroe Falls High School, he earned straight A’s in demanding classes, played three sports, and was a baseball standout -- the kind, former teammates say, whose advice was as important as his feats. Jason, 29, called his muscular big brother the “Gentle Giant.”
“In a roomful of popular, leadership-type kids, Adam would be the calming force,” said his retired Japanese teacher, Janelle Wargo. “He would be the one to talk to when people were upset, and that’s what’s so horrible. In the end, he couldn’t do that for himself.”
Adam started college in Ohio, and transferred to Washington State University in Pullman in 2001. The Knapps had vacationed in the state, where Dan’s sister lived and Adam nurtured a love for the outdoors. Jason also planned to attend college in the Northwest, so Dan pursued a transfer and the Knapps moved to Federal Way, a town outside Seattle, after Adam’s junior year.
After graduation, he moved in with his parents and took a part-time job stocking shelves at Trader Joe’s. He used the free time outdoors getting in touch with what he called “the rawness of everything around,” he wrote. He loved to camp, cook burritos over an open fire and fly-cast for trout on the Grande Ronde River. “There were so many magical times when that line met up with a fish,” he wrote. “The whole river is there and I would hit it just right. It was just like life . . . It’s that moment where everything is right.”
‘I’m Hearing Voices’
The first signs of darkness came a year after college, when he told his mother “I don’t think I’ll live to be an old person.” Months later, Marcia was watching television in the family room when Adam returned from a jog and pulled up a chair.
“I’m hearing voices,” he said.
Although her husband believed it was a case of depression that would fade, Marcia’s research discovered that imagined voices pointed at schizophrenia.
Greek for “split mind,” schizophrenia is not multiple personalities. It’s paranoia, speaking in monotone, the inability to find pleasure, and jumbled thinking. Often, the delusions and voices are as vivid as real life. Like others with the condition, Adam often denied he had it.
Adam’s father’s company closed its Washington offices in 2003, so the Knapps moved back to Ohio, where he had found a new job. Adam refused to come.
A little while after they left, he began living out of his car, showing up only occasionally at Jason’s apartment to do laundry. Within a few months, he ceased contact with his parents. Once well developed and neat, Adam was thin and wearing shabby clothes. Relatives asked whether he was on drugs. He showed up at his aunt’s house on Mother’s Day in 2004, convinced the FBI was stalking him.
The Knapps flew to Washington but failed to coax him back to Ohio. On her last night in Seattle, Marcia bought dinner for her sons and gave Adam the doggie bags, hoping he would finish the leftovers.
Outside, “a homeless person asked for money and Adam said, ‘Man, I don’t have any money but I have this food.’ And he gave the guy the food and I just started crying,” she said.
Calling The Police
Adam arrived by surprise in Ohio a few weeks later, and began a six-year journey through the mental-health system that pitted his erratic behavior against the efforts of his parents and doctors to help him.
He shifted between delusion and clarity, contentment and paranoia, deceit and honesty, accepting and rejecting medication -- swings that are common with his disease. His seven hospitalizations rang up $142,000 in charges. He used at least four types of antipsychotics and other prescription drugs.
Adam went on Social Security disability and was never able to hold a full-time job. He filed for bankruptcy protection with over $100,000 in student loans and credit card debt he had no hope of repaying.
When he told his parents soon after returning to Ohio that he was going to kill himself, their hopes actually rose. They already knew that those who could help wouldn’t act unless they had evidence of danger to himself or others.
“That’s what we were waiting for, something we could use to call the police,” Dan said. While he kept Adam busy that night, Marcia quietly slipped upstairs and dialed 911.
At the Ohio State hospital emergency room, a doctor declined to admit him. Although he had told the police about the FBI following him, he wouldn’t talk about it in front of the doctor, who hadn’t read the police report, Marcia said.
“He acted as if he was feeling fine,” she said. “He had this doctor so buffaloed.”
At home, Adam wouldn’t shower or bathe and left his clothes on the floor in heaps. He called an old friend, Ward Eaton, and asked whether he had seen a car following him around. “He told me it was everywhere he went, he’d look up and there it was,” Eaton recalled. “I told him I hadn’t seen it. He was really sick at that time.”
The voices in his head were out of control. In October 2004, he admitted himself to the Ohio State hospital. Because he was refusing medication, the staff concurred with his parents’ wishes and obtained a court order to give him the antipsychotic Haldol forcibly, according to hospital records his parents provided to Bloomberg News. Instead, he took it willingly, along with follow-up injections during a 24-day stay.
The four years that followed encompassed some of the happiest memories of Adam’s adult life for friends and family, as he steadily improved. Ward Eaton asked him to usher at his 2005 wedding and Adam showed up wearing a tuxedo and a big smile. He got a job at the local Trader Joe’s, gained weight, shaved his beard and dated again.
His reluctant parents relented when he pressed for a return to Seattle in 2007, making him promise to stay in touch and keep taking his medication.
Adam was now on Abilify, one of a class of “atypical” antipsychotics that cause fewer tremors and other side effects than earlier-generation schizophrenia drugs. He was calling home in the months that followed to talk about mountain hikes and fly-fishing.
Then came a phone call in June 2008 -- at 4 a.m. Marcia’s heart sank. “He said had this big idea -- an epiphany -- that he wanted to be a physical therapist,” much like other “grandiose” inspirations that had marked past relapses, Marcia said. “He wasn’t making sense.”
Speaking in Tongues
Worried sick and suspecting he had gone off his medication, Dan and Marcia booked a flight. Adam met them at the Seattle airport and offered no hug or kiss. His stare was cold. Hoping for diversion, they traveled to a lodge on an Indian reservation.
“It was a tough couple of days. He looked out the window and wouldn’t talk,” Dan said. “He just kept crying.”
His paranoia only grew after he agreed again to return to Ohio. His mother took him to the Ohio State hospital, whose records say he complained of “being watched” and “people setting traps for him,” and told doctors he “has computer knowledge which could ruin the world.”
He refused medications and left after six days. Two weeks later, his father watched him as he threw water at a mirror in his bedroom and began to “speak in tongues” with a rapid stream of babble.
A Critical Phase
In a six-day readmission, he took his drugs and left with a prescription for Risperdal, later changed to Abilify. He made the bankruptcy filing in 2009 and agreed to a repayment schedule. By the following year, he was independent again: living in his own apartment not far from his parents’ house in Ohio. He was seeing family and friends, and appeared to be supporting himself.
No one knew it at the time, but Adam had entered a critical phase. He was beginning to keep more secrets, to forget where he was, and was acting bizarrely again, sometimes in another world only he could see. He didn’t let on that he had stopped taking his Abilify -- somewhere around April 2010, according to his mother, based on records of prescription refills she examined.
Trader Joe’s called the Knapps on Aug. 31 and told them he hadn’t shown up the last two days. He had been talking to friends about a trip to the Adirondack Mountains in New York.
His car was found in a ditch off a service road at the Lake Placid Golf Club three days later. Asleep inside, he woke up and told police he thought he was in Massachusetts.
Urging Forced Medication
At Champlain Valley Physicians Hospital in Plattsburgh, New York, he wound up in the care of Scott McMahon, a psychiatrist who took a special interest in the case.
“Here was this young, really muscular athletic guy and he was obviously really intelligent,” said the 43-year-old doctor. “I liked to hike and bike too, and I immediately identified with him.”
Uncooperative throughout his stay, Adam wouldn’t wash or attend group sessions. “On one occasion, he was found in another patient’s room emptying urine into plastic containers” and told staffers “I am doing some tests in here,” hospital notes say.
Dan and Marcia successfully urged the staff to get an order for forced medication. Adam went back on Abilify. McMahon pushed Anthem Blue Cross & Blue Shield, Adam’s insurance company, to cover more time. The Indianapolis-based Wellpoint Inc. unit had agreed to previous extensions, but this time, 11 days after he went back on medication, it said no.
Seven More Days
The hospital appealed the decision and lost, according to McMahon, who said Adam was still sick and needed at least seven more days to get the drug dosage right.
“They just want to know if he’s killed anyone or tried to kill himself in the last 24 hours,” said McMahon. “No? Then he’s got to go. These people have no morals or conscience.”
“Anthem does not dictate when a patient should be admitted or discharged from care,” the company said in a statement released by Jill Becher, a spokeswoman.
Marcia pounded on Adam’s bedroom door after he ignored a call to dinner the night after his Plattsburgh release.
“I’m going to break this down,” she said.
“You’re not going to like what you see,” he warned.
When he opened the door, Marcia screamed for Dan’s help. Adam was bleeding from a gash on his left wrist and had a smaller wound on his right wrist.
Swallowing 30 Pills
Adam told police he didn’t want to live anymore. He had swallowed 30 Abilify pills and the remnants of a bottle of decongestant, and in the emergency room, he said he wanted to “leave my shell,” according to Dublin Methodist Hospital records. Eight sutures closed the wound on his left wrist.
After three days, he was transferred to Riverside Methodist Hospital in Columbus, an affiliated hospital with a psychiatric unit, for specialized care. He was discharged after four days.
The Knapps opposed his release because, they said, they believed he was still paranoid, and they pushed, again unsuccessfully, for a powerful injection of medication like the one that had worked in his earlier hospital stay in 2004.
“We were really angry because they never wanted our input,” Marcia said.
Adam agreed with his parents to “criteria” for his release that included increasing his Abilify, no driving, no alcohol, and no locks on his doors, according to a discharge summary signed by Robert Huestis, his Riverside physician.
Although his parents were “traumatized” by Adam’s behavior, Huestis wrote that they acknowledged that some of the “most florid” symptoms of his disease weren’t present. The Knapps said they never agreed to that assessment or to the terms of his release.
Another Hospital Stay
At home that night, Adam feared an attack by unknown enemies. When he decided to sleep in a downstairs room, his mother agreed to lie across the doorway to protect him.
Nobody could sleep. Around midnight, Lucy, the family’s boxer, was outside barking and suddenly went silent. Marcia moved to the door to check on the dog. Adam pleaded with her to keep it closed.
“Whoever just killed Lucy was going to kill me,” she recalled him saying. Lucy was fine.
At dawn, Adam said he needed to go back to the hospital. Once admitted, he turned down an “injectable med,” Ohio State medical records say. Dan and Marcia said their plea for a court order forcing medication was ignored.
Adam’s discharge meeting was held Oct. 15. He had become more social the week he was there, playing ping-pong at times, eating well, and his “symptoms lacked any acute features that warranted continued inpatient treatment,” according to notes written by his attending doctor, Stephen Pickstone.
Dan and Marcia were convinced Pickstone’s perception was based on Adam’s ability to hide his illness. The Knapps “verbalized an eagerness to have the patient return to their home,” Pickstone wrote.
”That’s nothing but a lie,” Dan said. “What I said is, ’How can you send him home? He’s still paranoid.’”
Pickstone declined to comment through Crawford, the hospital spokesman.
After his release, Adam wanted to go with his mother to his aunt’s house near Akron and insisted on driving. She gave in, deciding it would relax him. At a restaurant, Adam took the car keys off the table without being noticed and told his mother he was going outside to make a call. Instead, he jumped in his car and took off.
Police pinged his mobile phone and found it near a reservoir near the restaurant. Adam took the Ohio license plates off the car, making it harder to find him. He replaced them with New Jersey plates from the car’s previous owner.
Another ‘Gentle Giant’
Like Adam, Elisa Mefi was single, and the oldest child in a tight-knit family, although hers was larger. The daughter of Tina and Max Mefi, who came to Washington in 1977 from Samoa, Elisa had over 200 relatives in the Seattle area.
To her two younger sisters, eight nieces and nephews and parents, who all lived under the same roof, she was simply “E.” Her sister June called her the family brain, someone who organized gatherings and coordinated help for relatives in trouble.
Elisa attended Seattle public schools and would grow to be five-foot-eleven, with a kindly demeanor that earned her the nickname “Gentle Giant” -- the same thing that some people called Adam.
Elisa sang in her church choir and went to Bible class weekdays after school. After a lackluster academic performance in high school -- she finished but didn’t graduate, her mother said -- she signed up for Job Corps, a federal training program.
It was a turning point. She got a job and began helping support the family.
Until she was laid off from her $10.50-an-hour job as a medical records clerk in 2010, she contributed to the $1,200 monthly rent and utility bills. With leftover money, she took her nieces and nephews to the movies and McDonald’s.
The night of the crash, Elisa and a cousin picked up Elisa’s sister, Pookah, from the gas station where she worked as a cashier. Elisa made the trip two or three times a week, usually taking city streets to stop for food on the way back. This night, Pookah wasn’t hungry so Elisa headed north on Route 509, the same direction as Adam before he made his U-turn.
Pookah said they were talking about her decision to get her hair colored the next day “when I heard my cousin say, ‘What the hell?’ I looked up and it was a car coming toward us.”
Four Other Vehicles
Elisa tried to avoid Adam’s Subaru by pulling over to the side. “The car came toward us still,” Pookah said.
After the impact, she opened the door and fell to the ground in time to glimpse Adam from the back.
His Subaru had hit the Explorer and careened toward an Acura Integra, which struck the rear of Adam’s vehicle, according to the police report. Adam pulled himself from the wreckage and ran. He jumped over the guardrails into the southbound lanes where a small pickup truck hit him.
“All I saw all of a sudden was a flannel shirt bouncing off my hood,” Todd Rabe, the driver, told Seattle’s KOMO-TV.
Four other vehicles struck him, the last an ambulance. The driver had seen Adam make his U-turn, and circled back to help. He and his partner jumped out and worked unsuccessfully to resuscitate Adam.
Pookah, hysterical, called her mother, Tina. As her daughter described the scene, Tina realized the accident was less than a mile from their home.
With traffic jammed, the Mefis couldn’t get close by car and parked on a side road. On foot, Max managed to get through to the mangled Explorer. He peered inside to see Elisa pinned behind the wheel.
‘Dad, my side is paralyzed,” she said. “I can’t move.”
“Be strong, E,” Max told her.
Suffering from head and neck trauma, and multiple fractures, Elisa had surgery four times before Nov. 6, when she died. A video shows her hospital room filled with relatives singing in Samoan as they wipe away tears.
Death turned the Mefis’ den into a shrine. More than a year after the accident, the red roses from Elisa’s funeral are brittle in their vases. Centered on one wall is two-foot-square, color headshot of Elisa, surrounded by smaller photos interspersed with Samoan leis made of small white seashells.
The roses will stay there ”forever,” Elisa’s mother said.
‘Did We Do Enough?’
The Knapps say coping with the guilt is difficult.
“Days sitting in house, when we have down time, that’s the worst,” Dan said. “I start thinking about the wouldas, couldas and shouldas. Did we do enough? It comes and goes, and every now and then, I tell Adam I love him and thank you for helping me get through the day.”
Marcia asked herself aloud why she let Adam behind the wheel the night he took off. The car keys? “I should have picked them up from the restaurant table,” she said.
Adam’s funeral was Oct. 24, 2010. Elisa’s was four weeks later. At her crypt last April, Elisa’s family celebrated what would have been her 32nd birthday with cakes and flowers.
Along the banks of the Hoh River, one of Adam’s fishing haunts, family and friends gathered last June under fair skies. They each reached into one of his fishing creels for a handful of his ashes to spread on the river. They walked the water’s edge and ate a picnic lunch.
If she had it to do again, Marcia said she would have fought harder to keep Adam in the hospital.
“Honestly, you just have to scream,” she said. “You have to scream, you have to yell, you have to do whatever it takes to have your child medicated.”
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