by Jeanene Harlick | July 25, 2015 7:38 am
The first thing anyone sees when they walk through the doors of a residential treatment center for eating disorders is a sub-circle of women who – like me – have already been through several other programs. And who, like me, have been told by the admissions coordinator that this program is different, this program will help them – permanently.
I remember the first time I admitted myself to such a program, in 2004, to try to prevent a longtime battle with mild anorexia from spiraling into something more serious that would derail my life.
I was shocked when, following the preliminary bag search, vitals check, weight-taking and paperwork, nearly every client who introduced themselves to me did so by giving me a warm smile, stating their name, and then asking me my name as well as this question:
“So, is this your first treatment?”
I quickly and vehemently nodded my head, yes, it was my first. And then thought to myself – as a wraith-like 20-year-old, who looked like she should be dead, walked by me – “What?! You mean people do this more than once? I will never, ever become one of those people.” I shuddered in horror, turned quickly away from the woman (who I later learned had been cycling in and out of treatment for the past ten years), and whipped out my reporter’s notebook. If I was going to spend two months inside this place I was at least going to get a story out of it.
Unfortunately, I never did write that story. Because that first treatment marked the beginning of the end of my career, my confidence as a writer, and my life and identity as a “normal,” moderately-successful woman with boundless potential. I left the program with nearly all my underlying conditions unaddressed, but the obligatory weight gained. I had been supervised, the majority of the time, by blue-collar workers lacking any psychological training; women who worked there because it paid slightly better than the cafeterias or cleaning jobs they had held prior (I asked). I had been forced to attend pointless, hour-long chapel services every day despite being an agnostic verging on atheist.
At discharge, I tried to shrug off lingering feelings that for years I had been too “easy” on myself – since my anorexia had never approached the extremes of most women I was in treatment with in 2004. I tried not to think of myself as inadequate because I could never deprive myself as “well” as these women had. It wasn’t the failing to achieve their ghoulish degrees “thinness” that bothered me – it was the rigorous self-discipline it took to get there, and which I worried I lacked, in other areas of my life. Working very, very hard – giving everything 110 percent – had always been of utmost importance to me.
I tried to plunge myself back into my newspaper job. But two months later I had quit, and moved home. A year later I was in the throes of a full-blown relapse, and was trying to manage a menial but full-time, administrative job while having a resting pulse rate in the 20’s, and severe bouts of dizziness and exhaustion.
Finally, my parents intervened, pulled me out of work and, on the advice of my physician assistant – an alleged “eating disorder expert” (hah!) – demanded I go back into treatment. I had been trying, in the months leading up to the crisis, to avoid this outcome – I feared becoming “institutionalized.” I had tried to attend an intensive outpatient program, but lack of work and family accommodations made attending it feasible. So when the crisis came to its head, I begged to, at the least, enter a day or intensive outpatient program closer to home, instead of being shipped off to a residential program again. I had serious doubts as to whether repeating this expensive, level of care – which my parents would have to take a loan out to pay for – was worth it.
But my parents researched and sought referrals for two weeks, and they promised me, this center they’d found in the Midwest, it would truly help me. And the program did look awfully great, on its Web site, and its admissions coordinator told us all the things we wanted to hear. We didn’t know, back then, that you couldn’t necessarily trust what a for-profit treatment program was selling you. And we didn’t know about the accumulating body of evidence demonstrating that residential or inpatient* treatment is, for the most part, an ineffective level of care for adults with long-term anorexia – unless they lack all motivation to recover, are experiencing life-threatening medical complications, or are simply unable to initiate change on an outpatient basis.
Most centers present themselves as the only hope and first-line-of-treatment for individuals of all ages with severe eating disorders, and brainwash our families into believing the same. And once us clients are inside the centers’ doors, we often lack the resources or ability to discharge and fly home without our families’ support. We call home, crying, but the clinicians tell us, as well as our parents, that our protests are “the eating disorder talking”; that they are the rants of inherently broken and malnourished brains.
These people have letters after their names like Ph.D., Psy.D., LCSW, R.D., and more, so what are we (or our families) to think? Of course these clinicians are right, our vulnerable minds believe, even though everything inside us is screaming something isn’t. And it’s not the eating disorder screaming. Because we want to get better, and we know it will be hard. But we don’t understand how being locked up – in effect – and treated with less dignity than dogs, is going to translate to lasting recovery.
When we discharge, and inevitably begin our slow relapse, and finally – following years of repeating the same cycle – start asking whether maybe it’s the treatment center that failed us, instead of the other way around, our views are muted by the industry. Our voices are dismissed as the misguided notions of bitter and angry, “treatment-resistant” anorexics who have failed to “surrender” to recovery.
*“Inpatient” generally refers to treatment which occurs in a hospital-based program.
Our numbers are small, so maybe that’s one reason we’re so easy to silence. The lifetime prevalence of anorexia, in the general population, is 1 percent of women, and of that 1 percent, about 40 percent will recover within five years, and an additional 40 percent will achieve partial recovery. So while, as I will continue to demonstrate below, adult women with long-term anorexia are often being routinely subjected to forced treatment which decreases rather than increases our chances of recovery and at times rises, I believe, to the level of abuse and malpractice –we are tiny in number and stature, and thus hard to hear among the clamor of apparently more-pressing issues in mental health policy today.
And the most extreme of us look ghastly on top of it – only further reinforcing the incorrect perception that we’re literally out of our minds, one of the many widespread misconceptions about adult women battling severe and enduring anorexia (SE-AN)* which proliferate today. (Many women with severe, long-term anorexia are also not severely emaciated, per DSM standards, but struggle significantly nonetheless).
This article in my series will continue my attempt to shed awareness about how the eating disorder (ED) field’s continued institutionalization of women battling long-term eating disorders – particularly anorexia – is hurting more than helping, by taking a closer look at the lack of data supporting residential treatment’s efficacy, the wide disparity in licensing standards and enforcement nationwide, and the issues surrounding accreditation.
In an era of health care reform where more efficient spending of health care dollars, outcome-oriented accountability, is being stressed, it seems that examining what is looking more and more like a flagrantly wasteful use of insurance companies’ as well as families’ money is long over-due.
Particularly when you consider that, globally, we are spending more on inpatient treatment for individuals with SE-AN than we are for schizophrenia[i].
As noted in “Part 1” of this series, eating disorder treatment is a an estimated $3 billion industry, according to the most recent IBISWorld market report[ii]. Due to growing demand, industry revenue is expected to annually increase at – a minimum – a robust rate of 5 percent. The profit potential of the ED treatment industry is so ripe that nearly the entire market has been bought up by behavioral healthcare networks or investment firms. Acadia Healthcare, one of the largest behavioral healthcare conglomerates in the nation (following its purchase of CRC Health Group last year), owns many of the nation’s most prominent ED centers, including Timberline Knolls (Illinois), Sierra Tucson (Arizona), McCallum Place (St. Louis and Austin, TX), Montecatini (Carlsbad, CA) and Center for Hope of the Sierras (Reno).
The industry buy-out can work for good or bad, said Deanna James, director of marketing for Castlewood Treatment Center. While the influx of money can help improve programs, conglomerate ownership has the potential to hurt centers when industry giants purchase too much at once and impose standardized, cookie-cutter approaches on programs for efficiency and economics’ sake.
“It’s very hush-hush – treatment centers don’t want to be [publicly] branded as being owned by these conglomerates,” James said. “I do think it definitely plays a role in the quality of care.”
Castlewood – as well as the Eating Recovery Center in Denver – was itself bought up by a smaller, private equity firm, Trinity Hunt Partners, a few years ago. James said Trinity has not forced Castlewood to cut corners or compromise the center’s flexibility in the range of tailored treatment it offers clients, nor the center’s commitment to using empirically-supported practices. She believes the center has only benefited from its ownership.
[Disclosure: Castlewood Treatment Center is one of the many programs I’ve attended; I was a client there before it was bought by Trinity Hunt Partners, and before Castlewood obtained the quality-control accreditations which will be discussed below].
United Health Services, another huge behavioral healthcare network whose ED centers include River Oaks Hospital (New Orleans) and the Center for Change (Utah), is currently being investigated by the federal department of Health and Human Services for allegations of fraud and neglect that have endangered the welfare of patients. The investigation was spurred by a series of articles by two major newspapers, finding negligence, “cutting corners,” staffing failures and patient deaths across Arbour Health System facilities in Massachusetts, and violence and sexual assault, among other things, at some other, Midwest[iii]. United Health Services’ corporate office has also been under investigation for fraudulent Medicare and Medicaid billing.
But Jillian Lampert, a leader in the field and chief strategy officer of the Emily Program, whose levels of care include the Anna Westin House, hasn’t seen investment firm buy-out impact the quality of eating disorder treatment.
“I know that it’s a concern, but I think those [entities] are investing because they see some eating disorder programs as providing really high quality of care,” said Lampert, whose center remains privately owned and has not been purchased by any such company.
It’s impossible to know what, if any, impact this industry trend has actually had, because for-profit ED programs are, for the most part, not tracking clients’ long-term outcomes – leaving consumers with no impartial measuring stick by which to judge whether a program is effectively treating clients or not. The Emily Program is an exception, being the only private program I know, of to date, to have completed a 2 ½ year outcome study – including a control group – that will be published in the coming months. That study, and the state of outcome research in general, will be discussed in depth in “Part 3” of this series.
Despite the paucity of such research, however, insurance coverage of residential treatment continues to expand. National awareness campaigns by eating disorder “advocacy” groups – some of whose primary funding base is the for-profit, treatment industry – are constant, and insurance parity legislation, as a result, on the rise. Recently, the state of Missouri expanded insurance coverage for all levels of treatment, including residential, despite its unproven efficacy. If the federal government passes the recently-introduced Anna Westin Act this year, insurance providers in every state will be required to cover all residential, eating disorder treatment centers, regardless of the quality or efficacy of the treatment that center provides – a huge boon to the industry. While expanded coverage of eating disorder treatment is certainly a positive, it is essential consumers demand this legislative mandate come with strings attached: greater transparency and oversight of programs which now operate with minimal regulation and virtually no accountability. That the federal government allocate more of its medical research funds toward eating disorders, to help enable program outcome studies, is essential, too.
*The “SE-AN” diagnosis is generally used for individuals who’ve battled anorexia for seven or more years, have experienced multiple treatment failures, and have poor quality of life, among other variables.
While no specific, therapeutic modality has emerged as a definitive, “evidence-based treatment” for adult anorexia* the body of research demonstrating what setting is most effective for treating adulthood anorexia is clear. Outpatient – not inpatient or residential – care as first-line treatment for anorexia in adults is now being embraced as protocol by international clinical bodies. The Royal Australian and New Zealand College of Psychiatrists’ (RANZCP) – whose guidelines, published in 2014, are most current – revised their latest set of protocols to state that adults with anorexia, including SE-AN individuals, should be treated in the least restrictive environment possible. Many individuals battling severe, chronic anorexia can in fact receive successful outcomes in outpatient care, the RANZCP handbook states. The guidelines are based on a review of all the most current research to date[iv].
Outpatient care is also recommended as first-line treatment for bulimia.
The growing consensus among researchers, globally, is that residential or inpatient treatment should be resorted to only when individuals are experiencing life-threatening medical complications, are at extremely low weights, or are unable to initiate change in any level of community-based, outpatient care. Even then, residential treatment should occur for as little time as possible, with patients stepped-down to lower levels of care as soon as they are stable, experts say.
That’s quite a contrast from the eleven months I was forced to stay – against my will – at the last residential treatment center I attended, in 2012. And I was stable less than two months following admission there.
The research supporting these updated guidelines include studies on SE-AN individuals that have emerged from pilot programs in Australia, New Zealand, British Columbia, Sweden and Canada over the past few years. The alternative, largely community-based models of care utilized in these areas will be discussed in greater detail later in this series. But they are showing that outpatient treatment such as a form of CBT modified for severe anorexia (CBT-SE), as well as Specialist Supportive Clinical Management (SSCM)**, is proving highly success for women like me. One outpatient, randomized controlled study comparing SSCM to CBT-SE had a program retention rate of 85 percent – almost unheard of for my population; both groups also demonstrated significant improvement on nearly all outcome measures, including at discharge and one-year follow-up.
The RANZCP clinical guidelines also state individuals with all manner of eating disorders should be provided Recovery-Model-oriented care – an approach which also stands in stark contrast to most, standard treatment in the U.S. today, where the medical model predominates. Recovery-oriented care, as the RANZCP handbook puts it, maximizes self-determination and choice in treatment, delivers it through community-based services and in partnership with consumer organizations, supports the development of new models of peer-run programs, and recognizes the dignity of individuals and their right to make their own treatment choices – even if those choices might not seem, at first glance, as the best choice by the person’s treatment team.
The American Psychiatric Association’s guidelines – written in 2006, and which therefore could not draw from the recent, SE-AN research – have no specific recommendation for treatment setting for adults or adolescents with anorexia. APA guidelines advise clinicians determine level of care based on parameters such as medical condition, patient motivation, and weight loss rate. However their 2012 “Guideline Watch” did note that leading British researchers recommend against long-term, inpatient care as first-line treatment for adolescents, based on a large, multi-site study which showed adolescents receiving inpatient treatment fared worse than those who received outpatient care[v].
“On the whole, these investigators concluded that under the British National Health Service there is little support for long-term inpatient care, either for clinical or for health economic reasons,” reads the APA guidelines. “Inpatient treatment [for adolescents] predicted poor outcomes.”
I find it interesting that none of the big players in the insular world of U.S. eating disorder treatment and advocacy – much less the residential programs themselves – are telling prospective clients or families about the lack of empirical support for what is still widely being touted as first-line care for adults battling severe anorexia.
For Tetyana Pekar, MSc – creator, writer and editor of the Canadian blog, “Science of Eating Disorders: Making Sense of the Latest Findings in Eating Disorder Research” – the problems inherent in the predominance of unregulated, for-profit residential treatment in the U.S. are impossible to separate from the politics and economics of our health care delivery system. In case you need a reminder – we live in the only Western, industrialized country lacking socialized medicine.
“This is one of the fundamental reasons why I think for-profit healthcare is ridiculous and unworkable… As an outsider I can’t even imagine any kind of regulation being passed. It is so crazy to me how people [in the U.S.] think for-profit corporations will self-regulate,” Pekar said, speaking to the lack of accountability or transparency the ED industry is held to. “[Because] what’s the point. They get tons of patients. They help some, surely. But I feel there’s just no motivation on their part [to, for example, track client outcomes]. It will only cost more money.”
Added Pekar: “That’s not to say that all these centers want to do is make money, or that they don’t want to help….But wanting to help is not enough, particularly if you are not utilizing evidence-based practices.”
*Proven, evidence-based treatments exist only for bulimia and adolescent anorexia. Those include cognitive-behavioral therapy (CBT) for bulimia in adults, and family-based treatment for adolescents with three or fewer years battling anorexia. Interpersonal therapy (IPT) has also shown some effectiveness with bulimia.
**SSCM combines features of clinical management and supportive psychotherapy, including techniques such as collaborative goal-setting, fostering a strong therapeutic relationship, and providing care, support, education, reassurance and advice. The therapy is flexible and individualized, and focuses simultaneously on gradual resumption of normal eating and improving quality of life. Progress toward life goals motivates individuals to further reduce core, eating disorder pathology and later, maintain these improvements.
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.
REDC was formed in 2011 partly as a result of the publicity surrounding my lawsuit, Harlick v. Blue Shield. Critics of the ruling focused on the lack of evidence supporting residential treatment’s efficacy, as well as the variation in licensing and standards; a group of centers came together to try and start addressing the weaknesses in the current model of care, and that group became REDC, Lampert said.
Currently twenty eating disorder programs are members of REDC. You can see which ones by visiting REDC’s Web site here. While “twenty” sounds small, according to Lampert, REDC members represent more than 45 different centers – which she says is the majority of the residential eating disorder programs. With no firm figures on the specific number of residential treatment centers in the U.S., however, it’s difficult to nail down such figures.
“We decided instead of competing with each other, we should work together to improve treatment,” Lampert said, about REDC’s genesis. “We wanted to be able to address those critiques and provide the back-up data to refute them…[by] delivering programs that were meeting the same set of national standards, and by starting to do collaborative, outcome research studies.”
Lampert disputed the notion that placing profit over quality-of-care accounts for why many adults end up cycling in and out of residential treatment centers for years.
“I think it’s because eating disorders are complicated illnesses that generally take a fair amount of treatment visits” to obtain recovery, she said. “There is also the insurance piece – when clients are forced out early they don’t receive complete treatment.”
The CARF standards REDC helped develop require programs offer treatment modalities supported by evidence, and recommend, for example, incorporating SSCM and modified CBT for adult clients.
The standards also require care be delivered by clinicians with expertise in eating disorders and specialist training, and require that even lower-level staff receive at least six hours of continuing education training in eating disorders per year. Centers must also pay greater attention to clients’ unique needs and history, as well as age, socio-economic circumstances, career goals and quality of life. The guidelines also call for more cooperative, collaborative treatment plans.
CARF’s general, behavioral health standards – which programs who obtain the ED accreditation also have to follow – require organizations track client performance post-treatment, and report that data to relevant stakeholders.
It remains to be seen whether other residential treatment centers follow the lead of programs like Castlewood, the Emily Program and the Center for Balanced Living by adopting the specialized, ED accreditation, and therefore committing to delivering empirically supported treatment, as well as providing higher levels of transparency and accountability.
But when I learned more about CARF’s accreditation process, I had to wonder – does accreditation really ensure quality control? While the initial obtaining of it requires an external, on-site review – in CARF’s case, the review is conducted by a group of expert practitioners – external reviews occur just once every three years following that (the same goes for JCAHO). Apart from the three-year site visits, CARF relies entirely on periodic, self reports completed by facility administrators to measure whether a program is in compliance with standards. Client input – whether current or former – as to whether centers are living up to quality standards is never part of the review process.
If you look at Castlewood Treatment Center’s Web site, you will see that they still utilize a type of therapy called “Internal Family Systems.” This treatment – as well as lacking no evidence-base whatsoever, and whose use with individuals battling eating disorders has been criticized by many leading experts – was at the center of a highly-publicized lawsuit which eventually led to the resignation of former founders, Mark Schwartz and Lori Galperin. The lawsuit involved former clients who accused Schwartz and other Castlewood therapists of using IFS to implant false memories of sexual and ritualistic abuse in them, among other things.
How can accreditation be a safeguard, if a facility which has the CARF seal of approval – whose criteria explicitly includes the use of empirically-supported therapies – is still prominently employing a widely discredited modality?
The required, post-discharge, outcome tracking is also left up to centers to conform with on a “good faith” basis. Centers are not required to report the data to CARF (or anybody else), nor provide proof that they’re even collecting the data. Programs are simply required to show that they have a plan to track client outcomes. While CARF provides recommendations as to which kind of outcome measures best demonstrate treatment efficacy, it is left to centers to decide what measures, and for how long, the programs will track client status.
But again, even if centers design a good plan – whether they actually follow through with this outcome tracking is not monitored by CARF or anybody else.
I asked Brad Contento, a CARF communications officer, whether heavy reliance on center self-reports, combined with minimal, external reviews, is sufficient to ensure private treatment centers are providing care that is in accordance with best practices and the remainder of CARF’s accrediting criteria.
Contento seemed to think CARF’s reporting requirements were rigorous enough to guarantee quality control. He said accreditation is an “ongoing” process, and that facilities are “expected” [my emphasis] to conform every year to CARF’s standards manual, as well as submit an Annual Conformance to Quality Report, among other things.
“CARF also maintains ongoing contact with accredited organizations to consult on how to maintain conformance in between surveys,” Contento said. “In addition, we maintain internal studies as to the benefits reported by organizations themselves [my emphasis]. Accountability to persons served, greater focus on needs and goals of persons served, and improved quality of service delivery are some of the top reported benefits seen after implementation of accreditation.”
But Contento also emphasized that CARF, like any accreditation agency, is not a regulatory or licensing body; the ultimate responsibility of center conformance with quality treatment guidelines lies with the state wherein a program resides, he said.
“Our standards are designed more as an overarching framework for quality that can accommodate multiple approaches to treatment, as long as they are accepted practices,” Contento said. “Generally, CARF standards would not get into the level of mandating or excluding specific treatments… CARF is not a licensure or regulatory agency, so we do not prescribe specific treatment methods.”
When you put this last statement in the context of the overall regulatory situation, it pretty much epitomizes the multiple gaps which exist in the system. Because, as stated earlier, most state licensing standards for eating disorder programs are minimal, lack specificity, and involve little oversight. Moreover, in some states, once a center attains accreditation from a national body, the state defers oversight to that agency, through a process called “deemed status.”
The state of Missouri, for example, stopped overseeing Castlewood Treatment Center’s standards compliance once it obtained its Joint Commission and CARF accreditations, James said. JHACO and CARF are now responsible for ensuring Castlewood is living up to acceptable practice standards.
So let me spell this out: We have organizations like REDC or the AED offering accreditation as a solution to the disparity in licensing standards across states. But when you dig into accrediting bodies’ conformance criteria, you find the bodies’ assessment of whether a center is meeting standards to be mostly-based on inherently unreliable self-reports. And then, when you ask the accrediting bodies about the questionable reliability of such compliance measurement, the bodies say, “Well um, you know, please remember, we are not a regulatory agency.”
Which basically amounts to a regulatory, feedback loop in which no consumer has any assurance standards are being followed. Checks and balances are virtually non-existent.
I had already searched the academic literature for studies investigating whether accreditation impacts quality-of-care at eating disorder programs – there are none. So, given that, I asked Contento if he knew of any other studies as to whether accreditation impacts, similar forms of mental health care. He pointed me toward a few studies, and I did some additional literature searches myself. Most of the studies that have been conducted, however, are on facilities such as nursing homes and assisted living facilities. The study with the most similarity to for-profit, eating disorder treatment was an impact study conducted during 1998 – 2002, by the U.S. Department of Health and Human Services, which looked at whether accrediting opioid treatment programs through JCAHO or CARF improved the quality and effectiveness of these programs. The study evaluated 175 programs in 15 states. Like women with severe, long-term anorexia, the client demographic was also trending toward older individuals with more complex social and medical needs. Evaluators also noted the increasing role for-profit programs were playing in opioid treatment.
While the study unfortunately relied heavily on staff reports of accreditation impact, it nonetheless provided some helpful information. Overall, it affirmed that utilizing an accreditation-based regulatory model improved overall care and oversight[x]. Accredited programs, as compared to non-accredited ones, offered a greater array of comprehensive services, and 74 percent of program directors said accreditation improved their monitoring of patient outcomes. Seventy percent of administrators said accreditation improved programs’ quality assurance procedures. Shortcomings noted were a lack of patient input into care design and quality, and a need for better-specifying the protocols used to carry out routine yet critical functions – something which I also think CARF’s ED accreditation standards could use (CARF provided me a copy of the standards).
In another study – a 2007 evaluation of outpatient, substance abuse programs that looked at statistics from the National Survey of Substance Abuse Treatment Services database – positive results from accreditation were also found[xi]. Substance abuse programs in states where accreditation was mandatory had significantly more wrap-around and continuing care services than programs in states which only required licensure to operate. The enhanced serves were associated with better, long-term client outcomes.
While these substance abuse studies provide tentative indication that CARF’s (and JCAHO’s forthcoming), specialized accreditation could ensure better quality control at treatment programs which obtain it, it’s still clearly too early to tell what the impact will be. Some changes Castlewood has implemented since adopting the CARF accreditation do seem to be in line with what is now considered best practices for adults – for example, according to James, Castlewood has shifted its residential treatment protocol to keeping clients at that level of care for as little time as possible, and then transferring them to the center’s day or intensive outpatient programs.
“It’s becoming clear that these long, long lengths-of-stay, in residential treatment, are not appropriate… What works is keeping people connected to their lives,” James said.
CARF’s eating disorder-specific standards, James added, “help ensure we are keeping up with all the latest research” so that such empirically-supported models are followed.
So while I hope that specialized accreditation will improve treatment quality and accountability within the for-profit, eating disorder treatment industry, I remain worried nonetheless – particularly considering the gaps discussed above. There also remains the fact that only six programs currently have the ED accreditation, and that we may have to way until July 2016 until more attempt to get one.
The substance abuse studies on accreditation – while positive – do not necessarily translate to eating disorder treatment, either. While the illnesses certainly have some commonalities, eating disorder and substance abuse treatment are two different animals.
The only reliable way to know whether residential – or any level of private, for-profit, eating disorder care – is actuality helping clients, is by conducting post-discharge outcome studies such as the one recently completed by the Emily Program. That’s why we will turn to examining the striking dearth of outcome research in the field of eating disorder treatment in “Part 3” of this series. While I am well aware of the costliness and complexity of this form of research, the time for excuses is over. Women’s lives are at stake. Demanding that the private treatment industry start implementing this essential check on an unregulated system is urgent; until such reform occurs, we won’t be able to even begin to answer what type or level of treatment can truly help people battling the most lethal mental illness in existence today.
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Forthcoming articles in this series include:
[i] Hay, P. (2013). “New Evidence and Approaches in the Psychological Treatment of Severe and Enduring Anorexia Nervosa,” a paper presented at the 2013 European Forum Alpbach Conference: http://www.netzwerk-essstoerungen.at/download/k13_presentations/teachingday/Hay2_ED13.pdf
[ii] “Fighting the stigma: Rising awareness of eating disorders will boost demand for clinics,” IBISWorld Industry Report 0D5999, Eating Disorder Clinics in the US, August 2013.
[iii] “Congressman press HHS to investigate Universal Health Services behavioral facilities,” by Lisa Schencker, Modern Healthcare, June 23 2015: http://www.modernhealthcare.com/article/20150623/NEWS/150629958/congressmen-press-hhs-to-investigate-universal-health-services
[iv] “Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of eating disorders,” by Hay, P., Maddden, S., Newton, R et al in the Australian & New Zealand Journal of Psychiatry, Oct. 2014.
[v] American Psychiatric Association (2006). Practice Guideline for the Treatment of patients with eating disorders, Third Ed.: http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/eatingdisorders.pdf, and Guideline Watch (August 2012): http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/eatingdisorders-watch.pdf
[vi] Dold M, Aigner M, Klabunde M, Treasure J, Kasper S. (2015). Second-Generation Antipsychotic Drugs in Anorexia Nervosa: A Meta-Analysis of Randomized Controlled Trials. Psychotherapy and Psychosomatics Journal, 84(2), 110-6.
[vii] Center for Substance Abuse Treatment, Opioid Treatment Program Accreditation Impact Study. Web publication. Rockville, MD: Center for Substance Abuse Treatment, Substance Abuse and Mental Health Services Administration, 2004.
[viia] Programs with CARF’s ED accreditation include The Emily Program, Castlewood Treatment Center, Fairhaven Treatment Center, Canopy Cove, the Houston Eating Disorders Center, and the Center for Balanced Living.
[viii] “Update from The Joint Commission Regarding Eating Disorder Treatment Program Standards,” by Keesha Amezcua and Felicia Kolodner, in the AED Forum Newsletter:
[ix] See above (AED Forum Newsletter).
[x] See endnote vii.
[xi] Chriqui, J., Terry-McElrath, Y., McBride, D., Eidson, S., VanderWaal, C. (2007). Does State Certification or Licensure Influence Outpatient Substance Abuse Treatment Program Practices? Journal of Behavioral Health Services & Research, 34(3), 309-328.
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