The disorder is so powerful that, even though the body is wasting away, patients in intensive-care sometimes rip out feeding lines or hide the peanut butter provided by staff in their armpits.
Known as anorexia nervosa, the condition is a process of self-starvation – and, researchers say, the deadliest of all psychiatric disorders. Some estimates put the mortality rate at 20 percent.
Approximately 30 million Americans – two-thirds of them women – battle a clinically significant eating disorder during their lifetime, and hundreds of thousands of these people live in Missouri or Kansas, according to the National Association of Anorexia Nervosa and Associated Disorders.
In the most severe cases, a patient might drop to half his or her optimal body weight.
Kansas City once had an inpatient clinic that handled the delicate re-feeding process for patients from both here and around the country. The clinic was unique among eating disorder clinics nationwide in accepting low-income individuals on Medicaid and people with disabilities on Medicare, according to former staff members.
In business for more than two decades, the 16-bed treatment center’s last home was a wing at Research Medical Center. It operated for many years under the name VITA, from the Latin word for “life.”
When it closed two years ago, clinic personnel turned to one of their co-workers, Mary Beth Blackwell, hoping she could convince another local hospital to reconstitute the clinic.
“This has been my pilgrimage since 2012,” Blackwell says.
It has been an arduous quest.
For Sarah Wilcher of Kansas City, Mo., the road to eating disorder activism began a decade ago. It was then that her teenage daughter, Piper, confided to Sarah and her husband, Todd, that she could not stop the disorder’s characteristic cycle of binging and purging.
It was one o’clock in the morning and Piper was sobbing. The couple embraced their daughter, Sarah recalls, and they promised they would do whatever it took to help her.
But that was easier said than done. Her parents went from confidantes to combatants, clashing with Piper about her eating habits.
It was frightening, Sarah says, to feel just skin and bones when she rubbed her daughter’s shoulders.
Ever defiant, Piper moved out on her own at age 18. Beaten down by their experience, the Wilchers surrendered to the realization that the disease would likely claim their daughter’s life.
Piper has survived. But it took the suicide of an acquaintance to jolt her into recovery. That included overcoming alcoholism, which helped mask the anxiety and depression that contributed to her disorder.
Piper remains unsure about the cause of a disease that emerged as early as the fourth grade and later convinced her that eating a bowl of cereal would kill her.
“We didn’t realize how terrifying it was for our daughter to eat,” Sarah says.
Survey results released last year by the National Eating Disorder Association (NEDA) showed that:
- Approximately a third of the respondents who reported having eating disorders had been in treatment more than five years.
- Relapse rates among those with eating disorders were nearly 90 percent.
- Two-thirds of the respondents with an eating disorder reported other psychiatric conditions that concerned them, the most common being anxiety and depression.
Hard to solve
Like the Wilchers, Patty and Jim Fitzpatrick of Kansas City, Mo., have lived these grim statistics with their 26-year-old daughter Brooks, who has had an eating disorder since graduating from college.
Brooks, like Piper, has cycled in and out of various levels and types of treatment. She has tried programs in the Kansas City area and undergone extended stays at facilities in Denver and St. Louis. She has also made four treks to the Timberline Knolls Residential Treatment Center, just outside Chicago.
Back at home now with her parents, she’s working hard to stay on the path toward recovery that began with her stay in St. Louis, which ended in August.
She says her eating disorder first emerged when she was in her late teens. She was able to cope with it through her early years in college, she says, but it became progressively worse and got especially bad as she faced the uncertainties of life after college.
Filled with anxiety and self-loathing, she says the disorder wormed its way into her psyche.
“It just takes over, and this shadow moves in,” she says, “and all of a sudden, you are in the dark.”
Beating the disorder, she says, requires constant vigilance.
“It’s not like you have healed from a surgery. It’s more like doing physical therapy every day,” Brooks says. “You have to stay on top of it because that voice in your head – it is pervasive. And the more my voice gets louder, like my own self comes out, the more muted the eating disorder is, but it still echoes sometimes. It’s a process. I mean, I still fight it every day.”
A lost battle
In May 2011, Emily Heim took her own life after battling anorexia and bulimia for seven years. She was 21 years old.
Emily’s mother, Suzi, remembers seeing Piper and Sarah Wilcher through the crowd at the visitation. They were clutching each other and weeping.
For Sarah, the experience was surreal. “It was like going to Piper’s funeral with Piper sitting right next to me,” she says. “It was like going to ‘This is Your Life,’ literally. It was horrible.”
Piper and Emily had known one another at Lee’s Summit High School, each aware of the other’s eating struggles, and Sarah had become friendly with Emily through a church support group.
Not long after the funeral, Piper entered the eating disorder clinic at Research Medical Center for a second time. She improved enough to take a second stab at Timberline Knolls, the facility outside Chicago.
Now 25, she lives with her fiancé and their 14-month-old son, Phineas, in Virginia, where her fiancé is attending law school. But she hasn’t forgotten what frightening condition she was in around the time of Emily Heim’s suicide.
“I just thought I was pretty much doomed if things didn’t change,” she says. “Things got really dark.”
Patty Fitzpatrick says she and her husband did not seek treatment for Brooks at VITA because the family didn’t hear much good about it.
Sarah Wilcher remembers being appalled at a presentation when Piper was in the Research clinic. She says the speaker, presented to the patients as someone who was recovering from an eating disorder, acknowledged to the group that she wasn’t doing well and perhaps should be admitted herself.
Some detractors also questioned the my-way-or-the-highway approach of a physician who once served as the medical director of the clinic and chronicled what they considered to be serious lapses of care among nursing staff.
For others, though, the clinic was a literal life saver.
Suzi Heim, for one, found it comforting to have an eating disorder clinic nearby when the family began seeking treatment for Emily. “We were scared to death,” she says, “and we didn’t have a clue.”
Whether Kansas City should reconstitute the clinic remains a matter of some debate.
Steven Sehr, the medical director for New Directions Behavioral Health in Kansas City, says the city could use more services, including partial hospitalization, which allows a patient to stay in a unit during the day but go home at night.
More programs here, he says, would make it easier on patients and families who now have to travel elsewhere.
But, he adds, additional local resources might not be preferable to referring a patient to any of the nationally renowned facilities around the country. “I wouldn’t substitute the quality for the vicinity,” he says.
When one door closes
Research Medical Center is part of HCA Midwest Health, the region’s largest health care network, which includes 10 hospitals, outpatient centers, physician clinics and ambulatory surgery centers.
Asked about their decision to close the clinic at Research, system officials issued a statement saying that Research has “a 128-year commitment of providing high-quality, compassionate healthcare to patients in the Kansas City metropolitan area.”
The officials say the hospital regularly assesses the effectiveness of its programs and services, and it was one of those assessments that led to the difficult decision to close the clinic.
“Although the program was once very robust,” the statement said, “patient volumes dropped and the inpatient program was no longer sustainable.”
The statement attributed the drop to the growth of outpatient options. It said the hospital would “continue to evaluate and assess healthcare services.”
Former staff members blame the drop in patient volume on hospital administrators’ decision to change the name of the clinic to the Midwest Center for Eating Disorders, causing confusion about whether the facility – prominently known as VITA – was still operating.
The former staffers also say intake suffered when administrators shifted management of the unit to Research’s psychiatric hospital, where they say staff was unprepared to handle inquiries.
Making the case
Blackwell, the woman who has been trying to get the clinic reopened, worked there as a part-time therapist in addition to her role as the director of the Eating Disorder Resource Center at Jewish Family Services of Greater Kansas City.
Former clinic personnel hoped that Blackwell could resurrect the clinic and perhaps become its program director.
With the assistance of her co-workers, she developed a business plan that included a chronology tracing the clinic’s founding to 1986 at Menorah Hospital.
According to the business plan, the unit served approximately 1,250 patients between 2005 and 2011. The average age of the patients was 27, and females made up more than 95 percent of the admissions.
The data from 2011 showed that the average body weight change for the sickest patients increased by 25 percent. The average discharge weight was 106 pounds.
About half the patients were from outside a 50-mile radius of the Kansas City area, according to data from 2004 to 2010, and about 94 percent had some type of insurance coverage. The average length of stay was 19.9 days.
Blackwell and her supporters project that, if re-established at another hospital, a 12-bed eating disorder clinic could generate approximately $7.7 million in annual revenue through insurance reimbursements and private payments. The estimate is based on full occupancy throughout the year and assumes all start-up costs have been paid.
They estimate staffing expenses would be about $1 million a year.
The potential net profit or loss is unclear, supporters say, because it would depend on other expenses – such as utilities and patient-care costs – that are unavailable to them and would vary by hospital.
A separate analysis based on setting up the clinic at Truman Medical Centers projects it would operate in the black, with an 11.1 percent net operating profit in the first year.
Blackwell says discussions about finding a new home for the clinic went the furthest with Truman, but the hospital said in a statement that it did not have the money to pay for the up-front capital costs.
“We plan to continue to pursue this idea,” the statement said, “but at this point, we do not have a funding source available to get it going.”
For Blackwell, it’s been an uphill battle. By this summer, she was forced to concede that, short of someone stepping forward with funding, her pursuit had all but petered out.
More dispiriting news followed: Two former patients, women in their 20s, died within weeks of each other in July.
Blackwell doesn’t know the cause of death in either case, though she heard both women were underweight and struggling with their eating disorders.
Their deaths led her to wonder what might have been.
“They were actually willing to ask for help. They came into our program multiple times to receive treatment,” she says. “And because that was taken away, was that a contributing factor in their deaths? That is what the frustration is more than anything: Were they were senseless deaths and could they have been avoided?”
Mike Sherry is a health reporter with Heartland Health Monitor, a reporting collaboration among KCUR Public Radio, KCPT Public Television, KHI News