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Buyer Beware – Behind the Smoke-And-Mirrors: How Residential Treatment Is Being Sold as “First-Line” Treatment For Severe Eating Disorders Despite Research Backing; The Problematic Variation In State Licensing Standards and Oversight Across States; and Whether Accreditation is Really a Remedy to the Lack of Quality Control

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.

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7 comments

  1. Hi Jeanene, Your articles are amazing. We need to link up somehow. Please contact me. I am linking to this article and recommending your site to others.

    I also know that “help” for anyone who can’t pay an outrageous fortune doesn’t exist out there, and that “no treatment” or to escape what is forced upon us is for most of us, the best option of all. I am not the only one who “got better” by realizing that all the lies taught to me over the three decades I spent in “therapy” were completely false, and their drugs were useless to me and poisoning my body. My aim now is to get my family back, to repair the lies that were told to them, and to warn others not to fall into the trap I fell into. My blog is at http://juliemadblogger.wordpress.com (or http://www.juliemadblogger.com).

    Julie Greene

  2. Melanie says:

    Wow! You are so spot on about the needs of treatment for older women! I’m 48, have been in multiple treatment centers, inpatient and out, for the over the last sixteen years. You’d think I’d be in a much better place after having had this much “help”. What I am dealing with now is the shame and humiliation of not being “willing” or “compliant” enough to beat SA. I’m at the lowest BMI I’ve ever been at, the most depressed/anxious and feel I’ll never get better. The most recent attempt at residential was a year ago. Due to my low weight I was forced to sit in a wheel chair every waking moment without any concern how this would affect my severe chronic spine condition (would have been much happier being stuck in a bed tube fed). I complied like a good little girl and the result was the worst pain I’ve had in years finally crawling out of the chair just to lie on the floor bawling and praying for relief. This happened on a weekend which meant there were no specialists at the center. A 20 year old tech admonished me to get back into my chair or I would be in trouble. That’s when I said, “ENOUGH”! so checked myself out never going back. I got an apology from the center but the damage was done. I spent the next month trying to recover from the immense pain and damage of being in that flimsy wheelchair. My doctor was aghast at what happened. And by the way, I was expected to wait for a tech every time I needed to get my meds, eat, go to the bathroom, group, outings, etc…They were way understaffed so I just sat in a hallway most of the day waiting for anyone to help me. The crazy thing is they knew about my concern for individualized care but once they got me in there I received none. I’ll end by empathizing with you and the forced medication issue. At one center I was on enough gabapentin and Serequel to sedate an elephant. I was a walking zombie. When my family came to visit they said it was like I had a lobotomy. The center stated that if I refused to take the meds as directed my insurance company wouldn’t pay my bill and I’d be responsible for the charges. Ugh. Let’s keep this conversation going. THANK YOU FROM THE BOTTOM OF MY HEART FOR WHAT YOU’RE DOING!!!!

  3. Kate G says:

    I have experienced the horrors of a residential treatment center and also the benefits of one. I have gone to two programs and they were as different as night and day. I left the first program much worse than when I entered and relapsed within three months when I then entered my second program. This program was different. They were kind, nurturing, effective and knowledgable. I spent about six months there and that time “jump-started” me into recovery. I left in a very solid place and have now managed to remain treatment center free for about four years. I do credit this to the intense work that happened at that center. They took a whole person approach as well as an individualized patient approach and I (and many other women) responded well to it.

    I won’t say they cured me but I will say that they made it possible for me to begin living in the world again. I’m not in any way, shape or form functioning as a normal person of my age but I am stable enough with my ED that I can be treatment center free and remain physically stable. I struggle more with my co-morbids than I do my ED.

    I agree that residential centers need more oversight and outcome studies but I do think there are more good ones out there than you are implying in your article. And perhaps they shouldn’t be the first line of care but in an area like my own where the next level of care offered up from 1 hour OP sessions is an IOP four hours away there isn’t many other options to receive more intensive help. Perhaps a good answer would be to offer more day programs and the like but I can’t see that happening in my area of the country.

    I do think many of the quality residential programs often aren’t covered by insurance and so many people are limited in their options and end up in places that do have poor success rates and very poor programs. I do believe you when you say that you believe a different approach should be taken for SE-AN. However, for more typical and early manifestations of the disease I do think quality RTCs can be very valuable.

    I look forward to reading the rest of the series but I do hope you fairly portray RTCs when you write the section of experiences inside the centers. Not everyone has the horrible experiences you had. Some like me had good experience and I hope you portray a fair representation.

  4. Krista says:

    As someone who, for many years, was what most would call a “revolving door treatment kid” I have seen the best and worst treatment has to offer. I can say now, with complete confidence, that after a 15 year battle with anorexia, I am recoverED. Not “in recovery” like most facilities tell you that you will always be, but recovered. I have been kicked out of centers, called a chronic case, a hopeless case, and I am now recovered. Have you looked into the Monte Nido programs? I seriously owe them my life. They are the only program have I have been to that fights the eating disorder, not the client. It is the most well rounded program I have ever been to and the founder is one of the most amazing, humble women I have ever met. I worked with therapists, RDs, trainers, etc. who were recovered. I never once felt like it was just some talking head who really had absolutely no idea what I was going through. When they said they understood, it was the first time I was in treatment that that phrase didn’t make me absolutely irate because I knew they actually did understand. They fed my soul as well as my body and made me realize that I had the ability to live the life I wanted to.

    My first treatment experience was Remuda Ranch and where I thought I had failed, it was a case of the facility failing me. It was before insurance would even consider covering eating disorder treatment- they wanted my parents money. They wanted to strip me down and make me feel like I needed them and couldn’t continue to do any of the things I loved if I “really wanted to get better.” I’ve also been to my fair share of inpatient facilities- only one of which I would ever recommend to anyone. Anyway- your article was an interesting read and one with plenty of merit. I’m just saying, I did find the right place, and they weren’t after my money and genuinely wanted me to succeed. I’m still in contact with the majority of the staff i worked with and visit the house any time I’m in California. There is an up side out there- it’s a matter of knowing the questions to ask and what to look for.

  5. Melinda says:

    I would be so interested in your continuing this series. It’s given me a lot to think about. I work in the mental health system in authorization, and find it so interested to see that there is such little evidence based practice for eating disorders, and also find the comparison to SUD services interesting- long term residential isn’t proven to be effective treatment, so my agency generally prefers community based treatment. However, I feel conflicted–I went to a residential program when I was 18, and thankfully have been in recovery ever since. I had tried lower levels of care prior to that and was in a perpetual cycle of brief stabilization and relapse. From the authorization perspective I can completely understand why insurance doesn’t want to pay, and think it’s horrible that there is such little accountability for providers, which results in poor patient care. It’s so sad to think that so many of these for profit companies are earning billions, while the patients are chronically ill with a poor quality of life, or even death. But I also do feel personally thankful to a residential facility that aided me in getting my life back…All that to say, I hope you keep writing. It is prompting a lot of good thought, and hopefully change.

    • Melinda says:

      To clarify-my own treatment was eating disorder treatment, not SUD, which is why I feel so conflicted. I can see why you write what you do, and how the system has failed, but have also maybe by a stroke of luck been fortunate to benefit from it, and was fortunate to have received compassionate care/not have a traumatizing experience, although I now see that isn’t always the norm. Thanks for sharing your research and perspective on this difficult topic.

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