The RANZCP guidelines also warn there is no evidence supporting the use of psychotropic medications for adult anorexia. I found this particular protocol interesting, as every program I’ve attended over the past 11 years has tried to drug the hell out of me – including forcing me to take antipsychotics used to treat schizophrenia. A recent meta-analysis found there is absolutely zero evidence supporting the use of antipsychotics to treat anorexia[vi].
I was often a walking zombie as a result of over-medication. One Denver program forced me to take Zyprexa for months, which eventually landed me in a locked psyche ward for three days – because the medication brought me near the point of psychosis.
Ilana Kornfeld, 22, who attended the same Utah program I did in 2012, said the center forced her to take naltraxone – a drug used to treat substance abuse, and which numerous clinicians have since told her is completely inappropriate to prescribe for eating disorders.
“It was a terrible drug that made me feel sick and shaky, and I told [the center] that. But I was told ‘stay on it a bit longer. We can’t force the pill down your throat, but you would be non-compliant if you refused,’” Kornfeld, who was 20 at the time this occurred, said. “The amount of manipulation that went into me agreeing to take a drug I didn’t want to take in the first place, [and then me] continuing to [be forced to] to take it is absolutely painful to think about.”
This is just one small illustration of a huge problem within the industry that even many inside it admit needs addressing: the lax, state oversight of for-profit eating disorder programs, alongside wide disparity in licensing standards centers throughout the nation. Centers are also not required to adopt treatment protocols specific to eating disorders to operate a program, in any state.
“Anybody can say, ‘I’m an eating disorder specialist.’ There’s no quality control,” said Dr. Russell Marx, Chief Science Officer for the National Eating Disorders Association (NEDA). “The programs are not standardized… There’s all these places who say ‘We know how to treat eating disorders,’ but there’s no evidence to support it…. If you’re a family member it’s very hard to assess the quality of programs.”
In California, for example, all residential eating disorder centers are licensed by the Department of Public Health, under the category of “Congregate Living Health Facility” (CLHF), one of eight categories of long-term care facilities regulated by DPH. The other categories in this grouping include facilities providing rehab for people following brain, spinal or other life-altering injuries, skilled nursing homes, group homes for the developmentally disabled, retirement or assisted living facilities, pediatric palliative care centers, and hospice facilities, among other things.
While on one hand, this means California’s residential eating disorder programs are held to stricter medical and safety standards than programs in many other states (for example, the administrator is required to be a registered nurse), the level of mental health standards California programs are held to appears wanting. Eating disorder facilities are the only form of residential, mental health treatment overseen by the DPH; all other forms of 24-hour psychiatric care are overseen by the California Department of Health Care Services, including substance abuse programs.
This simply makes no sense to me. If you review the Health and Safety Code standards pertaining to CLHF’s (1267.13), you find nothing related to ensuring centers live up to quality, mental health treatment protocols or best practices – whether general or eating disorder-specific. And standards such as these – lacking specificity in regards to regulating the mental health side of treatment – are the norm throughout the nation.
In Utah, residential eating disorder treatment centers are overseen and licensed by the Department of Human Services; they are considered programs needing minimal medical, in contrast to California. Utah ED program licensing is the same type required of substance abuse treatment centers in that state – but it also covers children group homes and facilities for the physically disabled. In Missouri, residential eating disorder licensing even varies within the state itself. While McCallum Place is licensed by that Missouri’s Department of Mental Health as a “residential and day program,” Castlewood, the state’s other major ED program, holds a general state license as an “ambulatory mental health facility.” In Arizona, Remuda Ranch is licensed by the state Department of Health Services as a “Level 1 Behavioral Health Program.”
The variation goes on and on, the maze of standards and oversight so complicated and diverse that it is simply beyond the grasp of this writer – much less any potential clients or families – to comprehend or dissect.
This variation is, in fact, one argument Blue Shield’s lawyers made in my lawsuit (see “Part 1” of this series). Combined with the lack of outcome studies proving residential care’s efficacy, Blue Shield argued that residential eating disorder treatment, as it exists in the U.S. today, is more akin to education than to medicine.
I am inclined to go even further with that statement. When you take into account the experiences of former clients such as myself and my friends, and practices described in “Part 1” of this series, treatment at some centers virtually amounts – in my opinion – to quack medicine.
Wrote researchers Michael Strober, director of eating disorder programs at UCLA, and Craig Johnson, Chief Science Officer of the Eating Recovery Center, on the state of eating disorder treatment and thinking today: “It has become easy in our field for misunderstanding, misattribution and plain lack of knowledge to stand in for clinical wisdom…. It is little wonder that so many patients and families tell us they feel at a loss, not knowing who to turn to for sound, factual advice.”
Obtaining specialized, eating disorder accreditation, by one of the two major, national accrediting agencies operating in the U.S., is being offered as a possible solution to this problem by some leaders in the field, including the Academy for Eating Disorders (AED) and the Residential Eating Disorder Consortium (REDC).
Accreditation by a major, independent health care agency has long been accepted, throughout the behavioral health industry – as a way to help ensure treatment quality, and universalize the standard of care provided throughout the nation[vii]. Programs which obtain accreditation must conform to uniform, national practice standards.
Currently, most eating disorders obtain the general, behavioral health accreditation offered by the Joint Commission on Accreditation of Healthcare Organizations’ (JCAHO). Over the past two decades, the Commission on Accreditation of Rehabilitation Facilities (CARF), has also emerged as another, major accreditor of mental health care programs.
The Joint Commission standards are generic to all mental health programs, and therefore not eating disorder–specific. In addition, according to the aforementioned James, of Castlewood Treatment Center, the Joint Commission’s behavioral standards are primarily concerned with administrative and safety issues.
Castlewood, which operates programs in Missouri and California, is one of the only eating disorder centers in the nation to possess Joint Commission accreditation as well as the specialized, eating disorder-specific accreditation introduced by CARF in February 2013. CARF’s standards, which can be used for residential, inpatient or PHP (day treatment) programs, are based on guidelines developed collaboratively by REDC, the AED, and the International Association of Eating Disorder Professionals (IAEDP).
If more programs obtain such specialized accreditation – currently only six programs have it[viia] – it could mark a significant step forward in ensuring quality control. The REDC collaboration came about expressly due to some professionals’ concern that the proliferation of unregulated treatment is resulting in programs that don’t adhere to the level of rigor needed to ensure the safety and recovery of individuals battling severe eating disorders[viii].
“The CARF guidelines are very specific,” the aforementioned Lampert, who is also executive director of REDC, said. “It was very exciting that CARF adopted them.”
At the request of organizations like REDC and the AED, the Joint Commission has also started working on developing a set of ED standards to incorporate into their behavioral health care accreditation. After reading a summary of their efforts to date, it looks to me like the Joint Commission standards may be even more rigorous than CARF’s[ix]. The Joint Commission hopes to adopt and implement the ED accreditation by July 2016.
Lampert believes many residential centers have not obtained the CARF accreditation because they are waiting for the Joint Commission guidelines to come out.