Should Insurance Companies Cover Residential Treatment for Eating Disorders?

Should insurance companies cover residential treatment for eating disorders?  The price tag is high, about $1,000/day on average, but evidence of treatment effectiveness  is astonishingly low. Practically nil, as I’ve recently discovered. Despite spending my free time punching away different keywords into the PubMed search bar, I came up with very little. And you know what I think? I think treatment centers should be embarrassed. And I think, wow, maybe insurance companies have a point? (A scary thought! I don’t actually think they do, though – but then, I just can’t wrap my head around for-profit healthcare, having lived all my life with socialized healthcare, and loving it.)

Carrie over at ED-Bites recently blogged about the fact that there a dearth of evidence-based treatment for eating disorders. It is a complicated issue, I know, but I do think that any organization or center that offers treatment (especially at such a high price) has no excuse when it comes to providing information about the effectiveness of its programs. I’ll repeat that: they have no excuse.  So, can I blame heartless insurance companies in denying coverage for pricey, evidence-deficient treatment centres? I don’t know.

But enough ranting. What do we know about residential treatment centres (in the US)?

A study by Brewerton & Costin (2011) examined the long-term outcome of patients who “graduated” from Monte Nido Residential Treatment. They followed-up on patients, on average, 4.6 and 3.8 years after discharge, for anorexia and bulimia, respectively.Overall, the results were OK. The majority of AN and BN patients showed good or intermediate improvement:

  • 89% for AN (42% good, 47% intermediate)
  • 75% for BN (61% good, 14% intermediate)

But what did the authors consider good and intermediate improvement?

For AN: “good” outcome meant BMI of 18 or above and resumption of normal menses, and “intermediate” outcome meant either a BMI of 18 or above *or* restoration of menses. For BN: “good” outcome meant complete cessation of bingeing and purging, and “intermediate” outcome meant a reduction by at least 50%. Really? 

Let me just make this clear: the severity and negative effects of an eating disorder are not captured by BMI, menstruation status, or simply the frequency of bingeing and purging.

And keep in mind: these are people who graduated (successfully completed > 30 days of treatment). What about all the patients who dropped out or were kicked out?

Moreover: there’s no control group. These numbers are relevant only in light of a similar group of patients, evaluated 4-4.5 years later, with no treatment, or non-residential treatment (outpatient, inpatient, day-program).

Finally, the results were gathered using mail-in and Web-based surveys. It is not exactly difficult to fudge your answers (knowingly or unknowingly). I mean, who would really want to admit that after spending 30K+ on treatment (at least!) you are still struggling? Psychologically, that’s hard to do.

Brewerton only evaluated  one treatment center.

Maria Frisch however, wanted to find out more about residential treatment centers (RTCs) in general. In particular, she was interested in determining who are the people who seek and partake in this type of treatment? What is the average length of stay and how much does it cost? What therapies and treatment methods to various centers offer? What is the growth rate of residential treatment centers and finally, do they provide any information about treatment outcome?

Keep in mind, the information in this study is from 2004. That’s 8 years ago.

In a 15-year retrospective record review of patients treated at an eating disorders program in a large metropolitan area, Wiseman et al. found a decrease in inpatient average length of stay (LOS) from 149.5 days in 1984 to 23.7 days in 1998. In addition to shortened stays, Kaye et al. found that managed care companies often limit coverage for the treatment of eating disorders, leaving individuals responsible for the cost of more intensive rehabilitation after medical stabilization.

Frisch contacted 22 residential treatment centres that fit the study inclusion criteria. The authors also used information available on the program websites and brochures made available. The list of treatment programs contacted is shown in Table 1 below. “Three programs refused to participate…. one program initially agreed to participate, but then declined after reviewing the required survey, stating they ‘‘did not give out that type of information.’’ The other two programs did not respond to any contact regarding the current study.”

Frisch - 2006 - Table 1 Adapted

Was anyone else furrowing their eyebrows? I certainly was! To me, it is akin to selling a pharmacological drug and refusing to say how effective it is, what the side-effects are, what the right dosage is, and so on. Frisch didn’t mention which centers refused to participate.

From the 18 treatment centers that were eligible and chose to participate, this is what Frisch found:

SUMMARY OF MAIN FINDINGS

Demographic characteristics

  • Eating disorders treated: Only 13 residential programs treated EDNOS (all treated anorexia and bulimia nervosa), 11 treated binge eating disorder (I wonder what the number is now, especially with it being included in the next DSM)
  • Males accepted for treatment: only 4 out of 18 programs accepted males. (I wonder what the number is now, thoughts?)
  • Average length of stay: 83 days
  • Average age: 22; Average youngest: 14; Youngest: 8; Average Oldest: 40; Oldest: 65
  • Average cost/day (2004 #’s): $956 US Dollars
  • That means, in 2004, the average cost of residential treatment was: $79,348

Types of staff employed

(Data is available for only 16 RTCs here)

  • All staffed nonpsychiatric physicians and registered dietitians
  • One RTC did not have a psychiatrist on staff, and one RTC did not have a registered nurse (could be same RTC) 
  • 13 had doctoral-level therapists, 11 had staff with a Master’s of Social Work
  • 9 had “holistic staff” (I put that in quotes because I don’t understand what that means)
  • 8 had teachers, and 6 had bachelor’s level social workers and doctoral-level researchers

Most commonly employed traditional and alternative therapies

  • All RTCs (18) had individual, group and arts-based therapy.
  • Traditional therapies: 16 offered cognitive-behavioural therapy (CBT), 15 provided family therapy, 9 had a 12-step program, 6 and 3 provided dialectical-behavioural therapy (DBT) and interpersonal therapy (IPT), respectively.
  • Alternative therapies: 13 had dance, 12 provided yoga, and 7 and 5 provided music and equine therapy, respectively.

Spirituality 

  • 17 out of 18 RTCs incorporated “spirituality” into their treatment
  • 2 RTCs based their treatment on a specific religious belief

Although almost all centers offered CBT, the average amount spent on CBT a week was a meager 29 minutes. Compare that to art-therapy: 262 minutes, on average, or the 12-step program: 208 minutes. Spirituality, recreational therapy, meditation, yoga, nutrition, dance, equine, music, journaling and “food/feelings” therapy average out to more minutes a week per patients than CBT, DBT, family or relapse prevention.

Frisch - 2006 - Table 2 Adapted

Really? Need I say more? Now, I’ve never done any of that, but, I think it is not unreasonable to expect more time spent in therapies that have shown some promising results, like CBT and family therapy, compared to the religious-based 12-step program, or art therapy.

Art is great, don’t get me wrong. I used to do lots of it and I love it. But, this is treatment, not a vacation. No wonder people do well: they are in a controlled, relatively stress-free environment. Can you really do 262 minutes of art therapy once you leave treatment? Combined with all the other alternative therapies? I have my doubts.

What about building skills and tools to deal with real-life stresses, relapses (which are likely to happen), and eating when there’s no one there to watch you and lock the bathrooms after meals?

I started out by stating that I’m pretty baffled at the lack of transparency and accountability on the part of RTCs, and judging by the tone, I think Frisch agrees:

Sixty-one percent of all programs reported using some type of data to evaluate the effectiveness of their treatment program. Of these 61%, 63.6% of programs used self-report surveys to gauge treatment effectiveness, 36.4% used outcome studies, 18.2% used laboratory tests, and 18.2% used program-initiated telephone calls. Some programs used more than one of the previous listed methods.

Greater than one third (36.4%) of the programs evaluating treatment effectiveness relied only on client-initiated posttreatment telephone calls for effectiveness measures. Thirty-nine percent of all programs did not provide information on the measures used to determine treatment effectiveness.

You’ve got to be kidding me.

Here’s my advice (and it is the same advice I gave on picking a charity): look for transparency, accountability and evaluation of treatment effectiveness when picking an RTC for treatment. If you are going to spend money on treatment, be as confident as you can be that it is effective. Be very suspicious if someone at the RTC tells you that  “they don’t give out that kind of information” or that they “don’t collect that information”.

Frisch concludes with this,

One third of all programs evaluating treatment effectiveness relied only on client-initiated, posttreatment telephone calls as a measure of treatment effectiveness.

Although this may meet the requirement of treatment outcome research within some programs, it does not meet the standards of more universal claims of effectiveness… It is important for both patients with eating disorders and their families to appeal that such studies be conducted. Given the length and expense of residential treatment, effectiveness data are crucial.

I completely agree.

But back to question of whether insurance companies should cover RTCs:  I think despite the lack of research on the utility and effectiveness of RTCs, it is evil and immoral to deny treatment that does benefit the majority of patients to those who desperately need it. It is a complex topic, and not one I can fully unravel in a few paragraphs, but my general opinion is that RTCs, if anything, are good for symptom stabilization. And, spending a few month in a stable environment is rarely a negative, mentally or physically. Are they all they are made out to be? Probably not. Can they improve? Of course. But, it is evil to deny someone treatment for an illness that can, frankly, kill them, especially if other avenues are unavailable or haven’t been successful.

Readers, I’m really interested in hearing about your experiences with residential treatment centers. Have they been of benefit to you/your loved ones? Please share any positive or negative experiences you’ve had. 

(Sidenote, this entry is US-centric, because, well, the studies I found were limited to RTCs in the US.)

References

Brewerton, T.D., & Costin, C. (2011). Long-term outcome of residential treatment for anorexia nervosa and bulimia nervosa. Eating Disorders, 19 (2), 132-44 PMID: 21360364

Frisch, M.J., Herzog, D.B., & Franko, D.L. (2006). Residential Treatment for Eating Disorders International Journal of Eating Disorders, 39, 434-442 DOI: 10.1002/eat.20255

Tetyana

Tetyana is the creator and manager of the blog.

48 Comments

  1. I went to one of the residential facilities that participated, one that focuses a lot on those “holistic” therapies. They include massage, acupuncture (wasn’t my cup of tea, but others thought it was great for reducing stress/anxiety and the physical symptoms of refeeding), spirituality (not focused one a specific religion, they have a chaplain who is very open to work with anyone, even if it is to discuss how NOT being spiritual or religious can work for their recovery process). I think this place was trememdously helpful while I was there, especially in the realm of symptom stabilization, however BOTH of my stays were cut short by my insurance, against the recommendations of my team.

    I think that RTC stays should absolutely be covered by insurance. That being said, I also am a firm supporter of the belief that the TRUE process of recovery happens in an OUTPATIENT setting. IP and residential stays are great if your home environment is not conducive to interrupting symptom use, and if you need to stabilize your medical condition before focusing on recovery. It’s very hard to work on getting better when you’re not feeling well, your brain is starved, and you are so enmeshed in using behaviors. Once you are out of IP and RTC’s- that is where recovery happens. It is absolutely necessary to have proper outpatient care in a step-down approach ease integration back into the real world, with regular therapy, dietician, and medical appointments. IOP and IDP programs are GREAT, and also once you have completed those steps, keeping up with appointments and even finding groups (dbt, art, support groups) to keep up with accountability and keep some structure in your week.

    Yes, RTC’s could definitely use some improvement, but I do believe they are absolutely useful and anyone who is able to go and willing and ready, should. And insurance should recognize the value in RTC stays, and cover them in accordance to the recommendations of a patient’s team.

    Because of my two short stays (one was a month, the next was two weeks) my ED basically latched on the idea that I was not sick enough to deserve the care that I needed, and I ended up falling right back on my ass right when I got out, both times. So not only covering RTC stays, but covering the length recommended, and working with the patient’s team to come up with appropriate aftercare is needed. It is extremely hard to believe that you are worthy of any type of care or treatment when your insurance company is dictating what you need/will get rather than your providers, as they are the ones that know you better and are more in tune with your needs; medically, mentally, environmentally, etc…

    • Jessica, thanks for your comment!

      I completely agree with you that the hard part of recovery and the “true process” of it, starts in an outpatient setting. Absolutely.

      That said, should RTCs be covered simply because there’s no better alternative or because you believe that they are actually effective? If it is about medical stabilization, then what would you say is an appropriate length of time? In other words, to play the devil’s advocate a bit, how can you be sure that the team’s recommendation of say, 3 or 4 months stay, isn’t just a cash grab?

      Do you know what I mean?

      • In my case, I would say that I was let out too early because while I was there I was still using symptoms, even with 24 hour care, and still having physical health problems that should have been monitored. Also, I had just switched meds and was having horrible side effects that would have made it hard for me to live at home, and my mental state was NOT in a good place. RTC’s, more than any other treatment setting, are great for symptom interruption. Getting a solid amount of time to nourish yourself and not use symptoms is key to recovery. If your brain is undernourished, how can you actually try to fight the eating disorder???

        That being said, I really don’t think there is an absolute appropriate amount of time for anyone. In my case, they were trying to play it by ear, take it day by day, week by week. Case management appointment at a time, assessing and reassessing.

        I do think that a part of it IS about the money, don’t get me wrong. Especially if they give you a set amount of time to stay at the beginning of your stay. How can they know how soon you will be ready to leave after barely meeting you????

        …But at the same time, I do think, especially at the place that I went, that the staff really do care about the clients and are extremely sympathetic about the shittiness that is health insurance. I can’t think of anyone that I ever met in treatment that seemed like they stayed TOO long. And those that did spend quite a while there seem to be, overall, the ones that are doing better now, whereas the others have a higher rate of relapse.

  2. This is a really important topic that most people seem pretty frightened to touch. It seems to be heretical to question whether offering a safe environment for patients could be anything but positive.

    But there ARE risks, and costs.

    Among the risks: delaying necessary changes at home, disempowering or alienating relationships at home that are necessary for longterm health, exposure to behaviors and habits that had not been an issue previously, exposure to unhealthy relationships with other clients, an artificial environment that can’t translate to life after RTC, and therapeutic methods or beliefs that are false or don’t apply.

    Costs? Well, they’re high. Even with insurance coverage there are both hard and soft costs to the patient and family. RTC can’t last long enough or extend into life afterward so it is often like giving the first dose of an antibiotic and failing to give the necessary other doses – then blaming the patient for not following through.

    I find it helpful to distinguish RTC from inpatient hospitalization. RTC is of unknown value. Hospitalization is often necessary for saving lives and stabilizing patients. I don’t think it is correct to see RTC as the same thing or a stronger dose of hospitalization.

    The burden of proof, and this is what I think you’re getting at, should be on the RTCs. So far, that is not happening and won’t happen voluntarily in a free market system. The truth is that it is the threat of withdrawing insurance coverage that may force RTCs to do the documentation and accountability that the public deserves.

    • Thanks for your comment Laura!

      I think you are absolutely right about the distinction between RTCs and inpatient hospitalization. I think I failed to make that clear, or acknowledged the difference between them in my entry. That’s very true.

      I suppose my perception was(is?) that RTCs are in competition, in a sense, with inpatient. Frisch mentioned that there’s been a trend for more people going to RTCs versus inpatient – perhaps that contributed to my perception. I guess people also view RTCs as more friendly and hospitable environment?

      The risks you mention are very valid. In particular, I completely agree with “exposure to unhealthy relationships”, “artificial environment” and BS therapeutic methods.

      The reason I refused to go to my outpatient groups was because I was surrounded by teenage girls who didn’t want to be there – they were forced by their parents. (Parents were also part of the group, and my parents did not want to participate.) I went to Sheena’s Place instead, everyone who is there, wants to be there. That makes a huge difference.

      The fact that it is an artificial environment is also huge, particularly when the post-RTC treatment often (? don’t know the data on this) SUCKS. This is why I always wanted to recover and not pause my life.

      Evidence-based treatment and the health economics perspective of EDs are really interesting topics to me, that I’m going to try to explore more in future posts.

      I agree with your last paragraph. It is absolutely true.

      • You make an important point – the trend toward RTC instead of hospitalization. This concerns me. The RTCs are usually private and have a staff that specializes in both insurance approval and financing options (home equity loans, for example). If short term hospitalization has just as good an effect than RTC – I suspect it may have a better one, frankly – then a lot of money is at risk and a lot of jobs depend on NOT making that distinction.

        I’m not for not having RTC available. I’m just not sure that this is where resources should be focused and I’m pretty sure that a system dependent on RTC is decreasing resources in the outpatient and hospitalization arenas.

        But I’m open minded. Show me the evidence about RTCs being more effective in certain situations by some definable definition of services I’m happy. I just don’t see any of that. What I see is people incensed to be questioned and – on the other side – families drained of money and hope believing that the answer is RTC when the real hope may be in doing VERY difficult work and sacrifice at home early and ongoing.

        • *Note: talking about US system here, as that’s the only one I’m personally familiar with.*

          I wonder if some of the trend towards RTCs instead of inpatient is due in part to increasing awareness/knowledge of EDs in the public – so people may now be more inclined to seek treatment before or even if their ED is not immediately life-threatening (as far as I know, hospitals don’t tend to admit for “life-threatening in the abstract” – despite APA guidelines recommending otherwise: Hospitalization should occur before the onset of medical instability as manifested by abnormalities in vital signs (e.g., marked orthostatic hypotension with an increase in pulse of 20 bpm or a drop in standing blood pressure of 20 mmHg, bradycardia <40 bpm, tachycardia >110 bpm, or an inability to sustain core body temperature), physical findings, or laboratory tests [I].) I agree that short-term hospitalization may be just as or more effective than RTCs, but I’m curious as to how to you see this model in practice. True inpatient generally requires medical instability beyond just low weight or intake, or frequency of behaviors. Even something like electrolyte imbalances, e.g. hypokalemia, which can potentially cause life-threatening cardiac events, often just merits a couple of IVs and an EKG and you’re discharged within a few hours. The residential treatment model arose initially to fill the gap between inpatient and outpatient, offering care for those who don’t qualify for treatment in an acute medical setting but are experiencing a high level of uncontrollable ED symptoms & behaviors. While the current implementation of that is grossly expensive considering RTCs’ rate of efficacy, I do think that is a segment of the ED population that is crucial to address. What do we do with these individuals who have labs and vitals within normal limits (osteopenia/osteoporosis, dental problems, functional gastrointestinal issues, suboptimal nutrition or weight status, while impairing health and quality of life, don’t tend to outright kill people) but who can’t manage to feed themselves in a healthy and ordered way, severely limiting their ability to have relationships, succeed in school or work, have a full life outside of the eating disorder, & so on?

          In general, I’m a much bigger proponent of a health care system like that of Canada or the UK, but those countries do illustrate the drawbacks of having a system of care for EDs where if you’re between, say, “BMI of 12 and severely physiologically compromised” and “Able to make good progress with a course of CBT and/or a stint on fluoxetine, maybe therapy once a week” – you’re pretty much SOL.

          Hospitalization is also hugely expensive (if you’ve never seen an itemized bill for a hospital or ER visit – it’s pretty hilarious in a sort of appalling way.) It just seems like less to your average consumer because insurance is more likely to cover medical, rather than behavioral health care.

          I think some aspects of a short-term hospitalization model could work, but it would have to be incredibly well-integrated with outpatient services or it becomes a revolving door of a few weeks in, a few weeks out, gain & lose and repeat. This may be less of an issue for children with families who are able to provide a supportive environment for maintaining the progress made in the hospital but for adults and those without that environment…

          • Yeah, I agree with you. When I debated doing residential-type treatment, I was medically stable, even though I was engaging in behaviors between experiments, but I couldn’t phantom how to go about ingesting a normal amount of food and digesting it. I would’ve benefited from something like an RTC, at that point, for sure. That’s the downside of our healthcare system though, the waitlist is around a year, if you want it a fully covered spot, but then the stay is, in some places, at least 3-4 month.

          • In general, I’m a much bigger proponent of a health care system like that of Canada or the UK, but those countries do illustrate the drawbacks of having a system of care for EDs where if you’re between, say, “BMI of 12 and severely physiologically compromised” and “Able to make good progress with a course of CBT and/or a stint on fluoxetine, maybe therapy once a week” – you’re pretty much SOL
            I’m sorry, I’m not sure what you’re saying here?

          • Sorry, yeah, that wasn’t very clear. See my response to Tetyana below.

          • I have always gotten the impression from people I’ve known in those countries (and AUS/NZ to some extent as well) that there’s not exactly a surfeit of services available if you need a higher level of care than once-weekly appointments but don’t meet criteria for inpatient hospitalization on a specialized unit.

            (I could be wrong about this, if I am, by all means please correct me!)

          • Oh, I disagree, but I’m biased in that I live in Canada’s largest city. But there are (at least) two hospitals that offer day-programs in Toronto. One I think was 2-8/9pm, the other was 9-5? I don’t remember anymore. There was no waitlist when I was looking into it and actually went and got assessed for it (and got a spot, but ended up declining it). There is a wait-list for residential and inpatient, that’s true. And I think it can be lengthy – but I don’t know, I’ve never been inpatient. But people tend to put themselves on the waitlist just to be safe. I was very close to doing that at one point.

            Out-patient was also easy to get into, no waitlist or anything, that was definitely more than once a week appointments (although I declined to do everything else, because it was a waste of my time – honestly). That had group therapy, individual therapy, doctor check-up, dietitian and there was some case worker too. I was an adolescent then, though, not sure how things change for adults. The day program was for adults. But all of those times I fit the DSM diagnosis for either AN or BN.

            But yeah, I am not sure how that changes in rural areas, I’m sure access to care is worse.

            What I find is a huge problem for me, is that the treatment offered isn’t what I want. I don’t want art therapy, or some spirituality or connecting with your soul crap.. I just need help in meal planning and someone sitting there with me (thankfully my BF is amazing, so I don’t need that anymore). My problem is I know too much about eating disorders, and even when I was an adolescent, they dealt with me in a very condescending manner. At one point I bluntly told them: I switched doctors to get a referral here in SECRET from a parent. I put myself here despite protests from said family member. I want to be here, stop treating me like I’m a rebellious teenager.

            I’ve also been in groups that are too fluffy for my liking. I have a huge distaste for fluff, and I honestly can’t sit in a group where someone is telling me I have a chemical imbalance, or it is not me, it is my ED that’s talking. I walked out at some point when someone said that. No, it is all in my brain, there is no “ED” part of my brain. And there is no such thing as a chemical imbalance. Just help me disconnect my emotions and feelings from my eating dammit and help me eat normal meals and normal times, because until about a year ago, I don’t think I knew what that meant.

            Ranting, sorry.

            Anyway, I think others, who’ve had more experience with treatment, are more authoritative source. I quickly gave up on what treatment around here offers.

          • Tetyana: I’ve also been in groups that are too fluffy for my liking. I have a huge distaste for fluff, and I honestly can’t sit in a group where someone is telling me I have a chemical imbalance, or it is not me, it is my ED that’s talking. I walked out at some point when someone said that. No, it is all in my brain, there is no “ED” part of my brain. And there is no such thing as a chemical imbalance. Just help me disconnect my emotions and feelings from my eating dammit and help me eat normal meals and normal times, because until about a year ago, I don’t think I knew what that meant.

            YES x1000.

            I wish there were PHP/OP programs that were evening/overnight, rather than during the day. My problem with the day program I attended was that it was 9am-4pm, so I wasn’t able to work or take classes (which was why I dropped out; I needed to do both.) It doesn’t seem like a great system – at least it was a poor fit for me; I tend to struggle most at night especially when my insomnia’s bad. Leaving at 4pm having already eaten most of my calories for the day (breakfast, snack, lunch, snack) and all keyed up and exhausted from spending all day in therapy or groups, I left and usually ended up binge/purging before the day was over.
            It might work better for people who are less isolated, who are going home to family or a spouse/partner or friends. For me, I was just leaving to kill time til 9am the next morning when I had to show up again, and the wheels consistently came off the wagon if not immediately after I left, then certainly later that night.

            With an overnight program, one could still work or attend school during the day, thus less disruption of normal life and providing a chance to practice dealing with stressors that may arise in the course of daily living. Evening/nighttime has been found to be a more difficult time for many people, not only in EDs but depression, anxiety, etc. and I’d guess that many individuals would benefit from an environment that helps regulate their sleep habits and provides symptom interruption.

            It could also be cheaper: no need to have a full clinical staff on duty overnight, just psych techs and a psych RN for meds/emergencies as is protocol in RTCs. More of a babysitting gig than anything, really.

  3. Laura Collins:
    The RTCs are usually private and have a staff that specializes in both insurance approval and financing options (home equity loans, for example).

    […]

    But I’m open minded. Show me the evidence about RTCs being more effective in certain situations by some definable definition of services I’m happy. I just don’t see any of that. What I see is people incensed to be questioned and – on the other side – families drained of money and hope believing that the answer is RTC when the real hope may be in doing VERY difficult work and sacrifice at home early and ongoing.

    With regard to your first point: this is yet another reason why for-profit healthcare, with many different insurance companies competing to make the most profit by denying people access to care simply does not work. I don’t want to be very political on this blog, but this is an exception. Healthcare is a right; universal access, regardless of socioeconomic status or the sequence of nucleotides in your genome, should be prioritized ABOVE making a profit.

    The amount of resources and money spent on people whose full-time job is to figure out all the insurance and financial stuff out, like you said, helping families sell everything they own to help finance their child’s care, is absurd. Those jobs just don’t exist here. You are right, though, a lot of people’s jobs depend on this whole system.

    I agree with your last point, too. This is starting to sound almost like a scam on the part of the RTCs to just feed themselves. OK, I’m sure it is not entirely evil, I doubt it is, actually. But, we (and by we, I mean society, citizens, everyone) should require good and robust evidence that a treatment works. In good scenarios, also a theory or mechanism of how it works, but, even if we don’t know how it works, if the evidence is robust that it *does* work, that’s sufficient. Otherwise: what we are we paying money for (either through taxes or through private insurance)?

    RTCs – and I’ve never been – sound a bit like an odd vacation (and who doesn’t like vacations?) surrounded by people who are, probably more often than not, trying to win the competition of who is the sickest.

    We need more evidence than just self-reports that people liked it, or felt the benefited from it. That’s not enough: people say they benefit from homeopathy, too, but homeopathy is just water. It is impossible for it to do absolutely anything – and if it is not water, it is not true homeopathic medicine. Th benefit is due to the placebo effect. I don’t think placebo is worth $1,000/day.

    Like you, I am also open minded. I think RTCs can help, and I think they can improve in the treatments they offer. And frankly, hopefully they have, that study is from 2004, I’m not sure what’s happening now (at all). There is no reason why they can’t, in theory, be very helpful. They have their place. But, just like with anything else: if someone is making a claim, they need to support it with sufficient evidence.

  4. I think there’s a fundamental mismatch between any two or more of the following factors:

    1. What RTCs can actually do (weight gain & nutritional stabilization; interruption of behaviors; a intensive supportive environment while undergoing the aforementioned processes which can be incredibly distressing & cause increase in anxiety, depression or suicidality/self-injury; the beginnings of skills acquisition and work in therapy.)

    2. What RTCs claim they can do (CURE YOU)

    3. What people think RTCs can do (often similar to #2)

    I was going to say that maybe we need to dial back our expectations for what RTCs can actually achieve, but at that price tag — ha, forget it.

    Also important to bear in mind: MOST treatments for EDs have fair-to-poor rates of efficacy (it’s just that RTCs cost more.) In addition, the quality and approach of RTCs varies widely, even just within the sample named in the study.

    • Yeah, I agree. Try marketing “hey, pay us $1,000/day, and while you are here, you’ll do well, but we are not accountable for anything that happens once you step outside the door.”

      We do need to dial back our expectations.

      It is hard to recover from an eating disorder. I don’t think I’d be doing as well as I am right now if I wasn’t in a stable, long-term relationship, and living with my partner. But – how do you account for that in a study? You pretty much can’t. Well, you can, but it is very difficult, I think, to do it in a controlled manner.

      I don’t think anything, any type of therapy, any program, should be allowed to say they ‘cure’ anyone. That’s just not true.

  5. Short answer – yes.
    The Frisch study was done in 2004.
    An amazing amount of progress has been accomplished since then although the bottom line – the magic bullet – has yet to be found.
    RTC’s do not cure ED’s. The work there sets those who come on a potential path to recovery. As has been expressed, it’s what’s set up next on behalf of the individual is what counts and that includes family or support system involvement for more understanding about the illness as well as for techniques to help.

    • I couldn’t find too many studies similar to what Frisch et al have done since, though. Can you link me to some specific ones? Thanks!

      • I don’t know of any. I am as curious as you are about this and I am disturbed by the lack of such studies. At the NEDA Conference in NYC in I think it was Fall 2012, the lack of such data was emphasized during the keynote speech by Dr. Russell Marx.

        • Yeah. The lack of studies is likely due for many reasons, the RTCs and the like are just not keeping track of the data, it is hard to get your hands on it, there’s no money funding researchers who want to look at the effectiveness, maybe not many want to study this. Who knows, lots of reasons.

          My impression from a colleague of mine in my department (who does genetics research on EDs) was that getting funding for ED research is still rather difficult, and even with this psychiatry/mental health community, EDs are not viewed as a legitimate and serious illness.

    • I’m not sure I understand what you mean when you say “progress has been accomplished” since 2004: Do you mean specifically in regards to treatment centers, or in terms of a more sophisticated understanding of EDs in general?

      • More sophisticated understanding of ED’s in general as well as (for some anyway) more involvement of the family or support network of the person and therapy for that network/family a la Janet Treasure.

        There’s a lot less blaming going on than say back in 2005-2007.

        Many — not all — RTC’s still lack the understanding as well as the staffing to handle the rage, etc. that can appear during the first month or so of treatment. And parallel to this, the clinicians within the insurance companies need better training and understanding of ED’s, as well.

  6. I think we could easily track the root cause of this issue back even further– For starters, the eating disorder community has yet to even DEFINE recovery, or even just the ubiquitous ‘good outcome’. It seems to me that most researchers like to focus on external factors such as BMI, or simple-ish rating questionnaires. Few longitudinal studies are done, and even fewer longitudinal studies follow an adequate sample of patients over a very long time, or with many data points along the way.
    Sort of getting off-track, but when we have a ton of researchers at the helm of most ED-research organizations who really do not understand the ‘mind’ of an eating-disordered person, we’ll continue to have researchers calling for medical-only definitions of ‘recovery’. Anything else is not even on their radar. Any apparent cognitive distortions are chalked up to a ‘malnourished brain’– even if weight has already been restored, or if the patient isn’t even malnourished!
    So, in order to have truly GOOD studies on effectiveness of treatments, we’ll need to first come up with a generally-agreed-upon definition of ‘good outcome’. At the moment, if you ask people who have lived with eating disorders, you will often get a vastly different response than if you ask a medical professional or researcher who has no patient contact.
    Personally, I’d like to see the eating disorder community consider a definition of recovery that is more in line with SAMHSA’s new ‘definition of recovery’, but I have a feeling we are light-years away from that ever being a possibility.

    • Joy, thanks for your comment!

      I get where you are going with this, but I actually disagree. I don’t think the community need to define recovery per se, I think that they need to come up with a standard of what is considered “excellent”, “good”, “intermediate”, “poor”, etc.. outcome.

      We don’t need to define what recovery is. That’s different for different people, “intermediate” on the scale might be amazing for the person in question.

      But we do need standards. Otherwise, doing meta-analyses and comparing between studies is nearly impossible! Standardized demarcations and definitions on that scale of excellent –> poor, will just help everyone. We don’t need to even use a word like “recovery”.

      I agree about not just using BMI and menses as a way to measure recovery. There are many other problems, too. I didn’t point this out in the blog but it is crucial:

      The definition of “good” and “intermediate” in the Brewerton study (and many others) is dependent upon the INTAKE diagnosis. So, if I go in with AN, and a year later I’m at a healthy weight and mensturating, I’m in the “good” category. OK…. but what if I’m now bulimic? That’s not evaluated if your intake diagnosis was AN.

      I love the Eddy et al. studies I wrote about earlier, an average of 7 and 9 years of follow-up, decent sample size, and just a great illustration of symptom fluctuation and diagnostic crossover that absolutely needs to be taken account in all of these “recovery” studies.

      So anyway, I don’t think the definitions are as important as keeping them consistent from study to study, research team to research team, so that we can compare. And they need to involve more than numbers, and take diagnostic crossover into account.

      I am not sure that researchers need to get into the “mind” on an ED person, though. I don’t know. I think a lot of what’s done in the literature is just because that’s all they can do, it might just be the only data that’s available, or funds don’t allow for extensive psychological assessments, etc.. not that they necessarily believe BMI is enough to evaluate treatment effectiveness.

      • I think we agree more than it seems based on the wording I used. Perhaps I’m confusing things by using ‘recovery’ as my term when discussing benchmarking outcomes. The big point I want to make is that very few studies actually follow people beyond release from treatment, and few studies look at things such as: global functioning level, ability to make healthy food/exercise choices for one’s SELF (as opposed to level of ‘compliance’ with external decision=makers), stability of symptom reductions, reaching a stable (healthy) weight (as opposed to continuing to fluctuate quite a bit over the years).
        The take-away message is: Weight restoration does not equal ‘recovery’. Not even close. We need to stop using that as a marker of how ‘effective’ a particular treatment is (unless we’re solely discussing physiological/medical recovery, but that’s a MEDICAL issue, and not the core feature of a MENTAL illness).
        As far as getting into the ‘mind’ of an eating-disordered person, what I mean is: They need to stop simply attributing everything to ‘flawed brains’ or ‘malnourished thinking’. Recent studies have actually upheld the long-held stereotype of the typical restricting-type anorectic as being above-average in intelligence, yet these same individuals are often spoken of as if they are psychotic. By dismissing any eating-disordered thinking, we’re missing an opportunity to study OTHER factors that eating-disordered individuals may have in common, such as impaired sense of self, poor self-esteem, extreme sensitivity to stress/stimuli, etc. I think there is much to be learned from speaking with patients or recovered individuals– we can learn what worked, what didn’t, and why, in ways that are hard to do with quantitative-only studies. (i.e we should engage in some qualitative, exploratory studies to get ideas for things to follow up with more quantitative analysis).

        • Yeah, I agree. I’ll look into these studies. There are definitely studies that do look more comprehensively at treatment outcome and long-term outcome. I’ll write about them, too. Too many topics, too little time!

    • Agreed. We can’t MEASURE something that we haven’t defined as a valid construct. I too would like to see an operant definition of good outcome — or recovery, remission, whatever you want to call it — standardized across the board. I also take issue with the metrics used to measure EDs, such as the Eating Disorders Inventory [EDI], but that’s another topic…

      • Couple of papers I ran across discussing whether or not the EDI is useful for males or gender nonconforming individuals with EDs. Might be interesting to blog about.

  7. This is where it gets complex. Weight restoration and stabilization of behaviors ARE an important measure they’re just not a total measure. Without normalization of body and behaviors there is no mental recovery, but it also takes 6-12 months, at least, to see those benefits, and it requires ongoing maintenance and THEN you’re really able to do the sustainable hard work of sustainable recovery.

    So defining recovery by weight gain IS ridiculous but pursuing it without it is nonsense. And yes, the impairment of malnourishment is a significant factor – and that includes BN and EDNOS.

    But this is kind of like arguing whether a boat is sinking because it has a hole in the side or because it is filling with water: you have to fix the boat AND bail it.

    Back to RTCs, they’re simply too little too late IMO in most cases. If the home and the life they are going home to is not as safe, positive, on-message, and coordinated with overall treatment plan then I doubt RTC matters if it lasts a week or six months. We have to fix the weak, poor, uncoordinated outpatient care environment and make sure families are prepared to be an appropriate “level of care” before emergencies and after them.

    • And for individuals who don’t have that kind of family support or who aren’t going home to their families – is it possible (or desirable) to create a similar dynamic? I know the UCAN program is doing some work on this with partners/spouses…

      (I know your focus is on family-based treatment, I’m just doing some hypothetical free-associating, as an adult who hasn’t lived at home in years and knowing a number of individuals whose families have little interest in or ability to be involved.)

    • “If the home and the life they are going home to is not as safe, positive, on-message, and coordinated with overall treatment plan then I doubt RTC matters if it lasts a week or six months. We have to fix the weak, poor, uncoordinated outpatient care environment and make sure families are prepared to be an appropriate “level of care” before emergencies and after them.”

      definitely agree with this comment, 100%

  8. Didn’t Bulik et al do a study that showed all the points in comments to be true (that we need more studies and that data is limited) …

    … and that there are some effective approaches that we have some evidence for include CBT, DBT, phone- and app-based therapies/check-ins, some interpersonal therapies that build resilience and goal-setting, nutrition therapy, family-based therapy, supportive staff/nursing relationships, offering hope, harm-reduction, uniting couples against anorexia, treating co-morbid conditions and social situations (addressing stressors, bullying, grief, abuse, coping skills, educational and/or disability evaluations/interventions, etc.)

    We also know that early intervention and ongoing structure and support are important, but I don’t know how well RTCs fare with that, b/c of the life-disruption and dysfunction-exposure factors. I would change the “residential” treatment model to one of short-term inpatient, followed by long-term day-hospital/intensive outpatient with residential option available for families or individuals who need to travel for treatment.

    Some aspects of residential, though without hard data, might be helpful but could easily and better translate to the day treatment model. “Occupational” and “recreational” therapies, where patients practice doing things or coping with parts of their real lives … grocery shopping, restaurant outings, shopping for clothing, going swimming or participating in activities of particular or social avoidance, transitioning back to work, school, family-life situations … *while actually living their real lives*

    It’s less practical to run patients through CBT and DBT situations when the situations are limited to the artificial environments of treatment, hospitals, treatment peers and groups, staff, etc. If patients are going home at night, weekends, interacting with their lives, there are real, practical ways to process and problem-solve, and the continued support and structure to do so.

    I honestly think most of the fluffy groups at residential are just fillers for the day. Patients are there, and they could be sitting around … or they could do something to fill the time, so you may as well keep people busy and not ruminating on eating, food, feeling trapped, weight, body, etc. Even if every activity doesn’t have evidence support, activities could be funcionally therapeutic for the period of confined treatment or for building the ability to structure (or unstructure) down time. I wish hospital-based IP programs had more of the fillers, b/c they seem to mostly be the sitting-around type, even if the schedule lists something as happening. Whether IP or residential, the first goal is nutrition and weight-/health restoration, so everything else really is secondary.

    Often, day hospital is an insurance two-for-one (two days day tx=one IP day), or with Medicare, it’s usually covered as an outpatient service (but programs near me accept the approved amount as full payment, without an expensive daily co-pay). It gets very expensive, whether IP, residential, outpatient, etc., when programs charge separately for individual therapy or RD services. I think those should be bundled in the program and not charged as a separate professional service. Ditto for MD/psychiatry rounds, especially since patients can’t refuse rounding (daily charges add up … A LOT!) Rounds should be part of the daily fee, no matter the level of service.

    Having a less-restrictive care option, like day tx/IOP, allows patients to remain in structured care for much longer *and* live real lives with their ED and ED recovery. They can transition to partial days or partial weeks, home visits, etc., slowly over time and build coping skills while increasing the amount of time in observed and structured meals, sitting at healthier recovering weights that might be compromised almost immediately without that close supervision. I think it can also allow the FBT families to choose a level of care to allow family members more time to handle other parts of life and/or for families where some involvement would work well but maybe not the fully-described model (for whatever reasons). And for older patients, there’s less of an impulse to leave treatment b/c it’s just difficult and impractical to be gone for up to a year or even more for moms and people concerned with leaves from jobs/financial issues associated with leave. It better fosters supportive relationships and de-emphasizes the usually dysfunctional bubble of treatment-people.

    This lower level of intensive care also might mitigate high drop-out rates for research projects … if you’re able to offer people some life and freedom, while treating and supporting them, you might be able to keep them around long enough to decide to maybe stay a little bit longer. And maybe they would get a little bit better, or they wouldn’t relapse as much or as badly.

    • I like what you pointed out about how a great deal of the programming in residential treatment centers may actually be ‘filler’, added for structure, and to keep people from going stir-crazy.
      My biggest concern about this is: Then why MUST people have to pay the high-end fees of licensed professionals when the only ‘service’ occurring during this time amounts to, effectively, babysitting?
      That right there is a core belief in The Joy Project’s wish to develop a lower-cost treatment option….but I’ll spare you the details.
      Anyway, I firmly believe that if you’re billing for ‘occupational therapy’, you should actually be doing something therapeutic that directly relates to your occupation– not just some craft project that EVERYONE is doing, with vague descriptions of how it helps with ‘perfectionism’ or ‘hopefulness’.

      • I completely agree!

        This is why I get so passionate about all the nonsense alternative medicines that do not work, yet people pay tons of money for, because they “feel better”. Okay.. but we don’t evaluate medicine and therapies based on how they make us feel, we evaluate them based on how well they do the job they are claimed to do!

  9. This is a great discussion! M, you said:

    “We also know that early intervention and ongoing structure and support are important, but I don’t know how well RTCs fare with that, b/c of the life-disruption and dysfunction-exposure factors. I would change the “residential” treatment model to one of short-term inpatient, followed by long-term day-hospital/intensive outpatient with residential option available for families or individuals who need to travel for treatment.

    Some aspects of residential, though without hard data, might be helpful but could easily and better translate to the day treatment model. “Occupational” and “recreational” therapies, where patients practice doing things or coping with parts of their real lives … grocery shopping, restaurant outings, shopping for clothing, going swimming or participating in activities of particular or social avoidance, transitioning back to work, school, family-life situations … *while actually living their real lives* ”

    Do you have a sense of how short-term the short-term stay inpatient might be? This is where I think insurance companies clinicians don’t understand the importance of re-feeding, renourishing, and re-gaining as well as balancing.

    To your latter point, the occupational therapy piece of recovery is, I agree, hugely important.

    Steve Jobs, in the biography, spoke of the need for a case coordinator following his experiences of treatment. I think it would behoove insurance companies to fund the existence of a case coordinator to follow the progress of the person with an ED.

  10. Whoa so many comments. All I have to say (for now) is YES, and hell, treatment for ed’s should be FREE (I’m not sure what health insurance is though)

  11. I went to a PHP facility where most patients stayed together overnight (so similar to residential/IP in a lot of ways) and it changed my life markedly for the better. I had seen some outpatient therapists for god knows how long and the therapists never knew how to help me, told me to do things that made things worse unintentionally through ignorance/not knowing EDs very well, etc. Things were the complete opposite in treatment. Yes, there were weak points to the experience, problems with group dynamics, etc. and it was hard coming out and making it on my own but I did it and I am incredibly grateful to the people that helped me. I have been in recovery 2+ years and symptom free for one and I am absolutely positive that I would not be the person I am without that level of care. I needed the structure, the education (I did not know how much I needed to eat, and kept setting myself up for restrict/binge cycles even when I had before I was eating enough), and the positive/supportive environment while I learned these new skills.

    The place I went to, however, did not have the most expensive art/equine/etc therapies and it was about half as expensive as traditional residential treatment and I think every bit as effective. So there are cheaper alternatives.

    This touches a sensitive place for me personally, I admit. I know not everyone has a great experience with treatment like I did (even people who went to my place didn’t like it and I realize that) but if my insurance had not covered it I don’t think I would be on track to graduate college or have any life of my own. My eating disorder was my life and they showed me the way out. Yes, treatment centers should be held responsible for providing data on outcomes and for using evidence based therapies, but if anything I think insurance companies need to be more, not less willing to cover higher level care for eating disorders.

    • goinganonforthisone, thanks for your comment! I’m really happy residential worked so well for you! I think you are a perfect example of what they need to accomplish (learning to eat, manage life without falling back on the ED, etc..)

      I’m really glad!

      I think therapists can be awful but can be great. Though, from my limited experiences and from my friends, I find that I’ve had the best experience with psychiatrists. Some therapists that I saw when I was younger (for like 1 or 2 meetings) were awful, and other therapists my friends have seen, too. Just.. I don’t know how those people got through school, frankly. Though, I think the situation might be different in the US with more drug-pushing and medicating (actually, no idea if the numbers on this differ in US or Canada, but my hunch is that they do).

      Did you have a stepped-care approach? What kind of follow up did you have post residential?

  12. I just wanted to write you and say I think this was a brave, important topic to write about and I commend you for it.
    I have experience with one of the facilities listed…I won’t go into it.
    That said, ANOTHER facility I have experience with has sort of reaffirmed my belief that there are residential treatment centers that are “for profit” who are desperate to work with families and patients in any way they can to deliver the treatment they think the patient needs; this facility literally kept me free of charge for months while a lawyer I was working with did her best to get my treatment authorized. They had no idea if they would be reimbursed, but they kept me because they knew I needed some help and that other levels of care had been ineffective. I think it’s important to mention that this particular time was all while I was at a normal weight and relatively medically stable – just very, very sick behaviorally with a long, dangerous, complicated history.

    I have so much more to say and I’ll try to come back to this, but I wanted to put out there that there are genuinely compassionate centers that do what they can to try to help individuals.

    • Hi SB, thank you so much for your comment! I’m really happy to hear that you had a positive experience with one facility (how does it differ from the ones mentioned? Is it also on the list? You don’t have to specify if you don’t want to, of course.)

      I think one point I should’ve stressed in the post, but didn’t, is the whole point that these centers are for-profit. It is a business to them. That’s not to say people who work there or run it, don’t care about patients, treatment outcomes, or what have you. They might, but they also might not. There’s no direct incentive for them to be forthcoming with data on treatment effectiveness, for example.

      In my opinion, and perhaps that’s getting too political, but, that’s a fundamental problem with for-profit healthcare.

      And even if these places are pushed to be more upfront and open about treatment outcome, who is to say they wont just limit their patients to the selective group that’s more likely to recover, as opposed to treating patients who, statistically, might be less likely to successful complete treatment and remain symptom-free, but are no LESS in need of care. And certainly, deserve the same rights to treatment as the next person.

      • Hey! Thanks for the response.
        Okay, so the second facility I mentioned (that worked so graciously with my situation) differed from the first in a lot of ways, actually, but in terms of the financial stuff I think they were just a lot more willing to risk the financial loss – though I’m not at all saying the first didn’t to some degree as well…ah, I worry about being too candid with my initials out there just in case. But yeah, you’re absolutely right and I completely agree with the for-profit healthcare 😉 and the fact that it makes it harder to know that stats and such are reliable…clearly despite a load of caring providers (and I also agree that some are moreso than others) the bottom line is that they need to keep the place open – I think what I was trying to get at is that some, because they are for profit, are trying to stay OPEN and unfortunately have to turn others away while others are, perhaps, more money focused.
        So, that second facility that I had a very positive experience with is actually NOT on the list. I’d love to say what place it is just out of gratitude and because I believe it’s a legitimately good program as well (its model is DBT based and there are three 1.5 hour DBT groups weekly, they work their butts off to completely restore weight – which obviously is uncomfortable but HAS been shown to improve prognosis rates – etc etc. Of course it has flaws like every other place, but overall, even while trying to take a step back from my obvious bias, I believe in the place).
        That said, I so so so agree with other points you’ve made. As someone who still struggles very much with behaviors despite many treatment stays at that level of care, I do wonder at its overall effectiveness…that said, I really believe had it not been for my last treatment stay (where they were creative with me because of unresponsiveness to past treatments and actually allowed me to get a part time job – while in treatment [granted after I had been there for some time]) I don’t think I would be functioning at all in the way I do now. I’d never been able to hold a job or keep myself medically stable enough to do so. I’m building relationships in my life – through said job – that are meaningful to me, and while having a severe eating disorder does make it very hard to maintain them, I actually do. “ADL’s” (activities of daily living such as laundry, cleaning, showering, etc) do not come naturally to me at all (because I have co-morbid depression, etc) but because of this place and the routine they put in place, I’ve improved massively. So whether it was worth the money I couldn’t say from an objective standpoint – when it comes down to it it was an awful lot of money for one person, I can see and say that without any upset – but for me, it made all the difference in the world…and what I’m hoping is that learning to live in this way – functioning, albeit poorly – and building these relationships will ultimately help me to fully recover (and I do intend to make a difference in other women’s lives as a professional once I am in a place to do so).
        I did also want to say that I agree with another person who commented and said this was a brave topic to cover…personally I do think that residential treatment is absolutely necessary for some patients, but I also agree that it should be made to be as cost effective and evidence based as possible.
        Oh! Also. As far as alternative therapies such as yoga, art therapy, etc – I agree that there should, generally, be more DBT/CBT groups in most facilities, and perhaps less time in some places spent on the alternative therapies, but I was kind of thinking about it today…a lot of DBT is learning to implement more effective coping strategies, yes? I think art therapy, yoga, whatever ARE more effective coping strategies that help reduce the stress in a person’s life. Will most people do yoga every day after they leave? Probably not. But for some it will become very important in their recovery – and maybe that’s why there are so many options at that level of care. I also can see that life outside of treatment cannot be stress free by any stretch of the imagination, but I think that for most people who end up in residential treatment the disorder has become SO life diminishing (and yes, for some, life threatening) that it will be necessary for them upon discharging to simplify their lives in a way that may be unrealistic long term. As an example, someone who has been sick for over a decade – who struggles with a chronic and severe eating disorder – may have very little ability to tolerate high levels of stress. A lot of what treatment needs to do is teach them to deal with it, but when they leave is it such a bad thing to live a simple life for awhile? A therapist once said to me that after leaving the facility I was in, maybe I should scale down my goals for myself. (I wanted to go back to school, work, do all of the things that the disorder had made it impossible for me to do) – she said why not just get a room in an apartment with some people I like and work a very part time job and do outpatient treatment for awhile? She guaranteed me that would be stressful enough – at first, until I got used to it and could handle more without relapsing. Does that make sense?

        Ugh, I’m all over the place. Bottom line, I really love your blog, thank you so much for doing this.

        • SB: thank you so much for your thought out and lengthy comment! You’ve mentioned some really important points.

          I’m really happy to hear you’ve had such positive experiences with the second facility – and are seeing the long-term benefits of their treatment (the most important part!).

          I also agree with your point that some of the (as someone else mentioned) “filler” activities, can be useful for different people in their life post-treatment. But, as you say: does it warrant the price-tag? The price-tag should be for the treatment, more-so then, here’s a laundry basket of ideas for what you can do to fill your time.

          I also agree that scaling down your goals and leading a less stressful life, taking care of *YOU* is really important to get the routines really stabilized in your day-to-day life for a while, before signing up for more commitments. That’s a really important point. I’ve never done inpatient or residential treatment, but I also made a very conscious effort to focus on recovery in the past year.

          Anyway – I’m really glad you like the blog! And I’m super happy for your health and recovery! Your comments are really appreciated!!

          • After reading through most of these messages there is not one mention of the cost of an eating disorder. The emergency room visits that are $5000 for 3 hours and the surgeries from ED complications that are well over $75,000 for two surgeries that are out patient surgeries. so far. If going to a Residential treatment center or inpatient hospital stay is helping or for that matter decreasing to a good status I’m for it. I have a daughter that will be entering a treatment facility soon and at this point it’s either treatment or she dies. If insurances would look at the BIG picture and see how much they are saving in the long run by allowing treatment length of stay based on the individual needs. Yes… I agree there also needs to be accountability with the facility that their treatment is working long term.

  13. I’m back, hah! I mentioned this article to my therapist the other day and she told me something I actually didn’t know and had never heard – apparently there ARE non profit eating disorder treatment centers in the US. One of the most well known is Renfrew (yeah! who knew!). One of the problems that arises, unfortunately, is that there’s then little to no flexibility when insurance cuts out.

    Just thought that was interesting/worth mentioning.

  14. The last comment before mine referenced Renfrew.That Renfrew is supposedly non-profit does not mean that the treatment is more effective,or that it is less expensive.I was a patients at Renfew.It is extremely expensive and I did not find it the least bit helpful. I’d like to see a comparison between the success rates of inpatient hospitalization in eating disorder units versus residential treatment centers.My guess is that the success rate is not going to be any better.Most people I know who have been in hospital &/or inpatient treatment programs have been in multiple treatment programs.It is unrealistic to believe that ANYONE will be “cured “of an eating disorder in 30 days,or even 60 days. These places due serve a function in keeping people from starving to death.The first thing I did after leaving Renfrew was to go to a supermarket and eat ice cream and cookies,which had not been part of my plan. I suffer from anorexia,binge eating,and bulimia.If one of the numerous treatment programs had helped me,I would not have had to spend over $20,000 out of pocket to have my front teeth replaced. I have a friend who went to Renfew for the treatment of Binge Eating,Renfrew force feeds overweight binge eaters just as it force feeds emaciated anorexics.My friend was so freaked out by her traumatic experience at Renfew that she had gastric bypass surgery immediately after she left Renfew.I don’t know know the answer,but am glad you are addressing the issue. I did not find art therapy helpful either.
    I found Renfrew basically useless.There was one hour of D.B.T . a week.,little individual therapy,and a great deal of forced feeding. Most patients are biding their time until they can get out so they can lose the weight they’v been tube fed ,etc.I believe that coverage of intensive outpatient treatment might be more helpful,but am not sure.I was an 6 hour a day intensive program at Renfew. I left every day and binged. I’ve gotten more help for Overeaters Anonymous for FREE than I did in all these expensive programs put together,but then had to be de-programmed by a C.B.T.psychologist as I’d been brainwashed to believe t that sugar and flour are physically addictive. I’d like to see residential programs that incorporate evidence based therapist such as C.B.T. and D.B.T. and have the success rate of those compared to the programs that are using all sorts of non-evidenced based approaches.I do not believe that an eating disorder can be cured in 30 days.I don’t know a single individual who had been cured in 30 days.I’ve met plenty who have gone from one program to the next,and one hospital to the next.

  15. Our daughter, Rachel, became a serious runner her junior year in college. At the same time she began restricting her diet to lean proteins, fruits, vegetables, eggs and yougurts. Very gradually she dropped weight. In addition she suffered the loss of three friends and students that she knew due to accidents. Rachel graduated from college at 22 and looked as thin as her marathoner father. All that summer she kept “trying to gain weight.” She ate three “healthy meals” daily plus “healthy snacks” but without carbohydates, very gradually lost more weight. By that time she’d been working in AmeriCorps for several months she’d lost still more weight and we asked her to begin an outpatient treatment program. Rachel most willingly did this but her weight never stabilized. During that period I read Laura Collin’s “Eating With Your Anorexic.” I cannot recommend this book highly enough. Any parent of a child with an eating disorder should get this book ASAP. I think if we had seen this book, started the family based therapy AS SOON AS Rachel began restricting carbs, we would have possibly saved her from worse illness. By the time that good book was in my hands, Rachel had lost far too much weight. By then she’d turned 22 and we worried how this program would work with a young adult rather than with a teenager. Rachel’s doctor recommended a hospital inpatient program but Rachel voted for The Center for Hope of the Sierra’s. I liked this program because the Center had published a doucmented follow up study and as I read the results I applauded the sound science behind the program.
    Upon Rachel’s admission I learned something right away. AN is rarely the first diagnosis. What is seen first is OCD, anxiety, depression, bipolar illness etc. The AN is what we physically saw and somehow, missed Rachel’s anxiety and OCD. Probably becuase we had so much anxiety and OCD in both my husband’s family and in my own that we though most normal people were just like us. Worried lots and obsessive about work and play.
    I recognise that every RTC differs–just as every patient, but for our family, this was our experience:
    1) on-site medical evaluations and nursing care ensuring safe monitoring through frequent physical exams, weekly lab work and twice daily vital signs.
    2) An extraordinary therapist who provided CBT and also therapy for PTSD 3xwk due to the losses Rachel had experienced.
    3) Nutritional therapy micro managed by Dr. Lorraine-Platka Bird, a nationally known expert in the treatment of eating disorders. Can’t get better that Lorraine.
    4) Pyschiatric consult 1 hr per week ( though at times more frequently) with Dr. Wendy Oliver-Pyatt. Board certified in Neurology and Psychiatry, Dr. Pyatt is a genius in understanding both the biology and the behaviors of the eating disordered patient. She is a humanist,
    5) Once a week one-hour family session done via phone with Rachel and her dad. Come to find out, her dad was an obsessive, thin runner for lots of reasons. The two of them struggled together and with our gifted family therapist, we treated two folks for the price of one.
    6) life-time friendships with the women in treatment. Yes, other negaitive behaviors can be learned in treatment and the wrong mix of patients can be hell. However, Rachel has remained close to her housemates and they supported one another more than negatively affecting one another.
    7) a detailed weekly update that included all the parameters of Rachel’s care. Such communication was invaluable.
    8) expert care of a rare side effect of anoreixa–a hypermetabolic syndrome. Rachel did not gain weight consistently until she had been week-by-week slowly increased to what became 5500 calories per day. That’s a lot of food for an anorexic.
    9) Insurance paid 60 days of a ten month RTC program. We re- financed the house, took out a large loan, used up our savings and shopped at Goodwill.
    10) Upon Rachel’s discharge April 5, 2008, The Center For Hope planned transition to an outpatient program in our hometowm. For two months Rachel met with a therapist 3x week and for then next two months, 2x wk. At that point, Rachel spoke via phone with Lorraine, her CFH nutritionist 1x wk.
    10) Rachel has not relapsed since her discharge. She currently teaches kindergarden and also mentors women with eating disorders. After being in recovery for 7 years, the relapse rate drops to 10%.
    Sorry to write so much! This is the first posting I’ve done on any website about anorexia.
    To sum all this up, I know that the sooner the eating disorder is treated the better. We lost months because we told ourself Rachel “just needed to add back those carbs.” She said she would so we believed her. We didn’t understand how AN controlled her.
    It’s now thought that AN is about 60% genetically based. Environment can be the trigger for those genes to express themselves. My husband’s family had women with eating issues, my family, good salt-of-the-earth Irish folks, had issues with alcohol and drug addiction. And as I said earlier, anxiety and OCD ran in our families and in our house! Rachel became the center of the “perfect storm.” High school didn’t stress her much but college, those deaths, her hard working ethic, and her new running habit took her down.
    I wish we had recognized and dealt with all these things earlier but we missed them until it was smack in front of our eyes. I do believe if Rachel had been a teenager, home therapy based on the Maudsley Approach of Behavioral Change would have saved us.

    However, The Center For Hope did. The extensive therapy Rachel received from day 1 saved her life and ours. I know it led to long term recovery. Could this have happened in an outpatient program? Perhaps if she’d started it the day she stopped eating carbs. Our story is a cautionery one– treat the illness immediately, understand the treatment modalities, treat the diagnosis that may have come first, make positive changes in the home environment that will support and role model the right attitudes about food and exercise.
    Good luck to all of you. The right care and recovery awaits.

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