Can treatment for severe anorexia nervosa be delivered safely in a community setting? According to a recent paper by Calum Munro and colleagues (2014, open access), the answer is yes.
In 2001, a systematic review by Meads, Gold, and Burls found that inpatient treatment is not more or less effective than outpatient treatment for individuals with AN. Of course there will always be patients who will require inpatient care, but given the high cost, lack of clear efficacy, and known risks, it is important to ask if there are better options, particularly for a subgroup of individuals who may not need or may not benefit from inpatient care.
In their paper, Munro et al. describe a program that they’ve developed for treating individuals with severe AN in the community. The program is called the Anorexia Nervosa Intensive Treatment Team (ANITT) service. It is one component of a four-tiered system–it is a step below specialist inpatient care and a step above outpatient therapy that includes “group and individual therapy, dietetic and psychiatric treatment.”
This tiered system matches individuals to a specific tier based on their needs, which improves access to intensive services for those who need it most.
The following graphic explains the criteria for ANITT and the treatment services and care plan offered:
Anorexia Nervosa Intensive Treatment Team (ANITT) pathway. AN, anorexia nervosa; BMI, body mass index.
TREATMENT HIGHLIGHTS
The ANITT model appeals to me on many levels. Overall, there seems to be a genuine interest in listening to the patient, working with (and not against) the patient, and treating the patient as a whole person. There’s also a lot of focus on openness, transparency, and trust.
Assessment, Engagement & Stabilization
First, the team, particularly the dietitian, works with the patient to achieve a stable and “safe enough” (their term) weight. This is done by “fine tuning of nutritional intake and energy use around changes that the patient is willing and able to make.” Physical risk and safety are assessed by more than just a BMI value. The goal of this phase is to stabilize and build a trusting relationship with the patient.
Intensive Therapy
This phase entails therapy twice a week for 18 months. Twice a week. Eighteen months. Following the initial 18 months, there’s a “reduced-intensity” treatment for 6 months. After the two years, patients can be discharged (if they’ve achieved good recovery), continue on with another 6-12 months of intensive treatment, or proceed with supportive treatment services.
Supportive Treatment Service
The authors describe supportive treatment services as “more flexible and varied,” with the focus on improving quality of life, physical and psychological risk management, and maintenance of a good relationship with the treatment team.
Psychological Therapy
A few things stood out to me with regard to psychological therapy. First, the emphasis on individual needs. Second:
Our core conceptualisation of anorexia nervosa is to consider the control of eating and weight as coping strategies which give our patients relief from overwhelming feelings of vulnerability. We therefore do not seek to threaten this by removing their main coping strategies until they begin to establish other means of meeting their needs. We work around the control of eating and weight as long as a minimum level of physical safety can be maintained.
While I’m not so sure about the whole “relief from overwhelming feelings of vulnerability” thing (why not just “overwhelming feelings/emotions” or “difficulties with emotional awareness/processing/regulation,” but maybe those all mean very similar things, I don’t know), I do very much like the part about not taking away the person’s main coping strategy without first establishing another strategy in its place, or at least developing ways for individuals to deal with their feelings and emotions in, well, more constructive ways.
The psychotherapy relies on the schema therapy mode model. I am not familiar with it, but here’s an open access paper that describes the framework in some detail.
This is a part of Munro et al.’s paper that I really liked:
Contrary to accepted wisdom, we find the majority of our patients, once engaged in a sufficiently trusting therapeutic relationship, able to engage in therapy even when at low BMIs.
The authors expand on this a bit more in the discussion,
In our opinion . . . there is insufficient evidence of a causal relationship between starvation, cognitive abnormalities and a failure to engage in psychotherapy . . . An alternative psychological hypothesis to explain what is often labelled as starvation-related ‘cognitive deficit’ is that this is the emotional detachment and defensiveness of an individual feeling emotionally vulnerable within an insufficiently trusting therapeutic relationship. Our clinical experience is that emotionally engaged, trusting therapeutic relationships can be established with the majority of patients with severe anorexia nervosa, even at very low BMIs.
I like this because it echoes a lot of frustration I know has been experienced by individuals with AN who have been denied therapy or been told that it wouldn’t be beneficial because their weight is too low. But they want therapy, isn’t that enough? In any case, the time could be spent developing a trusting therapeutic relationship.
I find this blanket statement that therapy is ineffective until a patient reaches some BMI point to be incredibly patronizing and incredibly dismissive of many patients’ needs and wants, and ultimately, counterproductive to treatment in those cases.
To deny AN patients therapy when they are gaining weight and to tell them they will not benefit because their weight is low is counterproductive and may even be harmful. Some may not benefit, of course (but that is true for individuals at normal weights, too), but if a patient wants therapy, I think they should have the opportunity to receive it.
Dietetic Services
Here, too, dietitians work with the patient to make realistic goals while “supporting the patient to make their own decisions about nutritional change” and helping them tackle barriers to change.
Patient Risk Management
Mortality rates are high among ED patients; however, it is important to not overstate the risks. For one, I do not think scaring patients (or parents) into recovery is the way to go. Secondly:
Many patients describe experiences of being told they are at high risk of dying, do not become seriously unwell and therefore lose trust in clinicians. We think it is important not to exaggerate the risks but to make risk assessment as transparent and objective as possible.
(I feel similarly about the claims that purging is not an effective way of getting rid of calories; when I’ve been told that, knowing full well from experience that it is an effective way of getting rid of calories, I felt that the person telling me this either didn’t know what they were talking about or were lying to me. Regardless, it did not engender trust.)
BUT, WHAT DO PATIENTS AND STAFF THINK?
The authors provide only a glimpse of the results from a survey of current or recently discharged patients (72% of whom completed the survey). It would have been nice to see the full results of the survey, but this is preliminary data. The authors state that they “aim to publish data on quality of life and symptomatic outcomes for a cohort of ANITT patients in the near future.”
On a scale of 1 (not satisfied at all) to 5 (extremely satisfied), patients had an overall satisfaction rating of 4.0. Pretty good! The patients felt the staff was supportive and genuine, that the care they received was individualised, and that the treatment approach was holistic, focusing on more than just weight gain.
Between 2009-2011, only two patients dropped out and only five had to be detained under the Mental Health Act.
IS TREATING SERIOUSLY ILL PATIENTS IN A COMMUNITY SETTING SAFE?
Recall that patients entering the ANITT service had to have a BMI <13 OR BMI <15 and losing >1 kg/week. Of the 101 patients treated (over an 8 year period), 4 had passed away (crude mortality rate of 4.0% over an 8-year period); all had been ill for more than 10 years.
One patient died of starvation-related causes while an in-patient; one died of an overdose after weight restoration; the third patient died of post-operative septicaemia following acute bowel obstruction having dropped out of ANITT care; and the fourth patient died of pneumonia and heart failure with comorbid insulin-dependent diabetes, in the context of a starvation state.
Several other studies have found a similar crude mortality rate (see here, here, and here), although some have reported higher rates (11.5%). Importantly, BMI (unsurprisingly) appears to be an important risk factor for mortality:
The authors found that SMRs were not substantially increased across the BMI spectrum from 11.5 to 17.5, but increased significantly at the lowest BMIs <11.5. This evidence is consistent with our relatively low mortality rate despite regularly managing patients in the community with BMIs in the range 11.5-13.5.
And this, this, is what I wish more physicians would realize and/or admit to their patients (and their families):
… managed and stabilised low weight may allow for adequate physiological adaptation, substantially reducing the risk of serious medical complications or death.
While some may argue stating this promotes ED behaviours, I think that telling patients the truth promotes trust and openness, which I think are crucial for therapeutic alliance and, ultimately, successful treatment and recovery.
FINAL THOUGHTS
The authors conclude the paper with this:
We therefore argue that in-patient care is overused because of fears about physical safety rather than objective evidence of acute risk and because of beliefs about starvation-related cognitive deficits preventing engagement in therapy.
Honestly, I am excited for treatment programs like this. Of course, I do not know how well what is on paper translates into practice, but I look forward to the possibility of more treatment services being offered in the community setting–without unnecessarily taking patients away from their families, friends, work and/or school, and community. I think there should be many treatment options to serve the diverse needs of this patient population, and I hope this is one step toward that.
Readers, what are your thoughts?
References
Munro, C., Thomson, V., Corr, J., Randell, L., Davies, J., Gittoes, C., Honeyman, V., & Freeman, C. (2014). A new service model for the treatment of severe anorexia nervosa in the community: the Anorexia Nervosa Intensive Treatment Team. Psychiatric Bulletin, 38 (5), 220-225 DOI: 10.1192/pb.bp.113.044818
Interesting article, however, I am not supportive of the idea of a “safe enough” weight. Food is medicine as we all know. And anorexia thrives when a sufferers weight is low, or “safe enough”. I speak from seeing my own daughter’s struggle. She would rather sit at a “safe enough” weight and has done so for 6 years, with relapse after relapse due to her body not being at her set wt point. She can be very cognitively sharp even at a very low weight, she can have amazing sessions with her therapist, who she has worked with for all 6 years…yet she stays somewhat sick. I do agree that residential or inpatient is not always needed, even when weight is low. The family, if strong and supportive and committed, is the most affective tool in helping their child or spouse or loved one recover. With medical and therapeutic support also, of course. Having our young adult daughter home with us has proven beneficial in a steady path toward recovery. Very slow, but steady. I feel this program mentioned in the article could work, but the weight piece I believe is crucial, and true recovery comes with that being the goal…not just a safe enough weight, but SAFE. Stable. That is one huge piece of moving toward recovery. Without that recovery becomes elusive.}
Hi Faith,
Thanks for your comment!
Whether you support it or not, the safe weight idea comes from research findings (and, clinical experience). These authors are not stating that this weight is ideal, or is something that’s not going to have negative long-term consequences. The point they are making is that it is often (but not always) safe enough that you CAN do treatment in a community setting WITHOUT hospitalizing patients. This frees up resources for individuals who absolutely require hospitalization, and it also allows *more* individuals to access treatment. Because hospitalization is so expensive, pushing more people into hospitalization means not differentiating between those who absolutely need it and those who do not. It also means not providing appropriate treatment. Different individuals need different types and levels of treatment. It is crucial to identify what subgroups of individuals require and will benefit most from what treatment.
I will also say that perfectionism and idealism has no place in eating disorder recovery. Weight is important, for sure, but focusing solely on weight is rarely the answer. Parents, partners, and families are important, but a lot of people don’t have those — any of those.
I’m glad that having your daughter at home has been helpful. This is one component I like of FBT — it doesn’t take kids aways from parents. However, FBT is not always the best model and is often inappropriate. As Sally said, a lot of individuals suffering with EDs have work, school, family, and social obligations. Treatment often has to be done on an outpatient setting. This program shows that intensive outpatient-style treatment can be safely accomplished for fairly sick individuals. This is a good sign given that funding for health (especially mental health) is abysmal and while we should be advocating for increased funding and more support, we cannot sit by and watch people who need help be locked out of it or be put on wait lists simply because of the idea that for individuals who are at low BMIs, inpatient hospitalization is the only way to go. As this study shows, it is not the only way. This is great news.
This is my dream model. As an older adult with family, financial, social and other commitments, it is not as easy for me to go IP or to a residential program, especially in Canada where the program I am being offered is halfway across the country. This kind of model is appropriate in a wider setting, and given the literature supporting the proposition that models of care designed around and for teens are not effective for older adults, I believe this kind of care would be more beneficial.
Regardless, I disagree with the BMI cut-off in this model, no matter the age of the patient. Someone who has lost 20 or 30 pounds in a matter of months is exhibiting severe restrictive behaviour, and could also benefit from a treatment regine like this; acknowledging that if caught early, their treatment may be shorter than for people with lower BMIs. In general, I think it is time to start getting people out of hospitals and treatment facilities, and treating them where they live, in their communities.
Hi Sally,
Thanks for your comment! I completely agree with you. Treatment models need to really start accommodating adults who have school/work, family, social, and other commitments. Treatment needs to be realistic, not idealistic.
What do you mean by you disagree with the BMI cut-offs? What do you think they should be? I think the important thing to remember is that this is the a four-tier model and this is just one tier (the third, and the one before inpatient). I think part of the reason they are where they are (pretty low, IMO) is because of funding. Well, I suspect that’s the case. Ideally I think this kind of stuff should be available to anyone with an ED, regardless of BMI, but it is fairly resource-intense and since this model is actually implemented (it is not just a theoretical proposal), I can see why they had to make the cut-offs where they are simply because they might not have funding to accommodate more people.
I agree with Sally, this is exactly the sort of treatment I think would really help me to get better. Unfortunately I have been left with a pretty poor excuse for treatment (monthly medical monitoring at an outpatient clinic) as I didn’t show an improvement with a previous therapist. The frustration about being denied therapy is something that I experience a lot.
Anyway, I would love to see more intensive outpatient treatment like this.
Hi J,
Thanks for your comment. I’m sorry to hear about the poor treatment (I mean… medical monitoring simply isn’t treatment, you know; it is just, well, medical monitoring). It is incredibly how much far we have to go to provide good treatment. Have you been denied therapy because of weight-related issues, lack of improvement, both, or something else? (Just out of curiosity)?
Tetyana
Haha, yeah, when I told them I was angry about being left with no treatment, they were adamant that medical monitoring was a very important “part” of treatment. Yes, definitely a part but not by itself!!
I was told it was due to lack of improvement while seeing a therapist for CBT (i.e., fill in this food + thoughts log and we’ll discuss your thoughts) for a few months, but they’ve also said that being a low weight often means patients are unable to engage, so I’m guessing it’s both. However I feel like I’ve always been very engaged (I did CRT and was very good at it, haha) and function well in my everyday life.
Saying that, I wouldn’t reach the BMI proposed here of <13. I think it would be best to consider those who haven't improved with (rather crappy) outpatient treatment rather than a weight criteria… basically an alternative to inpatient/an option for those who have been ill for a number of years.
Argh, just lost my comment! Not sure if this will be a repeat post
Haha, yes, when I told them I was angry about not being given treatment they assured me that medical monitoring was a very important part of treatment. Yes, a part, but not by itself!
I was told it was due to a lack of improvement with a few months of CBT (i.e., food + thought logging), but they have mentioned that low weight patients are often unable to engage in therapy. I don’t feel that this is the case with me, I feel like because the treatment I’ve had doesn’t really “fit” with me that they’ve equated this with no therapy working ever. Treatment needs to be tailored to suit the individual, IMO, rather than treating AN (or any ED) as being the same in everyone.
Saying that, I don’t fit the BMI <13 criteria, but I think rather than a weight criteria, this treatment would be great for those that have been ill for a number of years. Basically an alternative to inpatient.
I agree with you w/r/t it being an alternative to inpatient and expanded to those who haven’t improved with OP Tx. I think $$/resources is the problem. I am sure if they had the money, they’d offer much more comprehensive (and necessary!) treatment to a wider range of people. The benefit of this vs. IP is that because it is cheaper, you can Tx more people, but of course, it is still more expensive than OP.
Ugh @ medical monitoring being important. Yeah. Duh. But it is “part of” treatment. Like… the bare minimum that just ensures you are alive and are not getting significantly worse? Awful, awful stuff. I’m sorry you have to deal with that crap!
I’m not a fan of the ‘safe enough’ weight if it’s accompanied by complacent attitudes… ‘safe enough’ weight has kept me sick and stuck for many years. An improvement is ‘safe enough to BEGIN’ – with a constant push to move forwards whether that be defined by weight gain, upped intake (more or better nutritional quality), reduced purging, reducing exercising, working on sleep habits, etc. I think a common mistake is defining progress in weight terms only. Not letting someone have therapy until some future ‘better’ point is also letting them down and it’s an issue that’s been difficult for me – I begged for years for help with trauma for example, and for about 15 YEARS was told I could address that when I was physically better.
I wasn’t given enough help until I was too unwell, and then I was written off as too unwell to ever get better and therefore not worth the time and resources to help. That was frustrating to say the least.
Another reason this model is hopeful for me is that I think severe anorexia needs a different approach than not-so-severe, especially if it’s been enduring – the mindset has shifted, the medical problems can be different/worse, and treatment for early stage anorexia has usually already been tried – trying the same approach over and over has wasted a LOT of time for me and others.
Completely agree with your last point!
I like the concept of community treatment and you make a lot of great points. I get that there are funding issues and theoretically the BMI cut-off seems like it would be good to use since resources are limited; however, why do we settle for this in mental health and with eating disorders? If you have 100 people with cancer, diabetes, asthma, etc. and only resources to treat 50, we don’t only treat those with the most advanced disease. This would be seen as horrible, but yet society accepts this when the problem is deemed to be a mental health issue. I think as a society we need to question why this is ok.
The concept of “safe enough” or “stabilized low weight” concerning to me. I get that it is being used in a context here but it is a somewhat unsafe message. To someone with anorexia, saying it is ok to remain underweight reinforces that low weight is fine and it is internalized as “I shouldn’t gain anymore weight.” I walked the thin line between healthy and unhealthy for years and would say I was recovered but still did not have consists nutrition. I was not truly recovered but hanging on by the skin of my teeth struggling to keep it together. When I relapsed, it was a quick spiral down. I refused inpatient treatment because I had previously been on multiple occasions and each time I got stable but would relapse. I I tried my luck on a loose form of FBT and after 1+ years of solid, consistent nutrition my thinking changed and within another 1+ years all the anorexic thoughts dissipated. I account this to having solid and consistent nutrition which allowed my brain to heal and my body to go back to physiological homeostasis. I think breaking down the research like you are doing is great.
I have had severe and enduring anorexia for nearly 30 years. I have had 10 hospital admissions, but never managed to “recover”. For me hospital didn’t work because its just swapping one set of rules (ED Rules) for another (Hospital rules).
I would come home and relapse back to how i always had been at home. I ended up booted out of treatment more than once. Discharged back to my GP for medical monitoring.
This resulted in me bingeing and vomiting, followed by starving for several years. I went down to BMI 12 and struggled to function.
I decided it was worth the risk of trying to change. Quite simply i was going to die if i didn’t DO something.
Eventually i had an assessment by the specialist ED team and was offered 40 sessions of CBT based therapy.
I have been able to move forward and have made more progress at home, than i ever did as an in patient. For me i’ve needed to do it myself at home.
For me i am realistic about things, i know i am not going to be “cured” and its more about managing things in a better way, so that i can have a better quality of life. A quality of life i never had before, when at BMI 12 and bingeing & purging for 10 hours a day.
It took me 30 years to accept that losing weight is not the solution to feeling crap and all life’s problems. Its not easy to change. But for me its been better to do things slowly at home than to be pushed through a hospital system that didn’t work.
I added my thoughts when I reblogged this post on tumblr (http://bananapeppers.tumblr.com/post/104766821765/treating-severe-anorexia-nervosa-in-the-community), so I won’t repost them here. I’m very excited about this treatment model. It’s a huge step in the right direction with regard to treating eating disorder patients with dignity and narrowing the power imbalance between clinicians and patients. It gives me hope to read that there are researchers challenging the idea that low-BMI anorexics are incapable of participating in their own treatment.
And, as always, thank you for all of the science communication you do!
I also a not a fan of a “safe enough” weight… when I was being treated for anorexia (for fifteen years; I then switched to bulimia a few years ago), I was told a minimum weight I had to be at, and that number become my personal absolute maximum weight. I feel like this is pretty applicable to any anorexic- if he/she is told that a certain weight is acceptable, they’ll make sure never to go above that. So, the lower the “acceptable” weight is, the lower an anorexic will aim. I don’t think anyone should be lied to- like someone being told they’re at risk for cardiac arrest because of their weight when they’re not- but I think this would be psychologically harmful, which ends up as physically harmful in EDs.
I’m also happy to see therapy being provided even to people who are medically compromised… I think even if someone isn’t in a place where they can do deep reflection/analysis/whatever, therapy can still be beneficial, even if serving a different purpose. In the beginning stages, having a non-judgmental, confidential person to talk to about general anxieties, food concerns, body image concerns, and things like that seems like it would be really helpful.
Two reactions, as the spouse of an adult AN:
1) It is GREAT to see someone trying to establish a community treatment for individuals with weight low enough where there is usually pressure for in-patient treatment, despite the poor state of evidence on hospitalization. My spouse has celiac disease, which means that essentially we could not trust any in-patient facility that is the usual treatment for individuals with very-low BMIs in North America. Death by AN complications, death by gluten? Medical providers in our area are generally just refusing to treat.
2) At the same time, the reality is that this treatment at the moment has no more evidentiary support than the standard options for AN. No follow-up by Munro since this study. If you are a clinician-researcher, please, please, for everyone’s sake, design an empirical study that you preregister.
I agree with everything you said. 100%. Best wishes to your wife and you.
I’m glad to hear new things are being tried for treatment of long-term AN. (Though I know this program specifies it is for “severe” rather than “chronic” AN).
As a teenager, I made friends with young women who preferred being in IP/residential treatment as opposed to being in school and home. They would lose weight the second they got out of treatment, so they would get to be hospitalized again. And sometimes the places they went were absolutely horrible, but they still preferred it over school and home life. I guess I’m just trying to wrap my brain around what things would have been like for them had going back IP not been such an option.
My one concern about the program is, as others have expressed, the weight cut-off. Though, this is more a lack of understanding about how treatment is done in countries outside of the U.S. For many years, as a teenager my only motivation for gaining weight was to stay out of IP settings. Thus, I kept my weight as low as I could while staying out of the hospital. If I knew I could get down to a very, very low weight before being hospitalized, or possibly without being placed in an ED unit altogether, I would totally have done that. Yet I’ve read comments on this site that stating that in many other countries people don’t go into the hospital unless their BMI is extremely low. My ED would have loved that!
Again, not a concern directly about this treatment program, but about what I’ve read here about treatment globally. Not that I think the U.S. does ED treatment, well, not by a long shot! I just wonder how I would have fared had I not lived in the U.S.
It just sucks for those who are sick but aren’t at super low weights. If you have a weight that is too low for you but not “low enough” it makes you feel as though you are fine and there is no problem because all of the studies on anorexia only focus on very low weight people 🙁