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The Need for Complex Ideas in Anorexia Nervosa: Why Biology, Environment, and Psyche All Matter, Why Therapists Make Mistakes, and Why Clinical Benchmarks Are Needed for Managing Weight Correction

Michael Strober, PhD, ABPP1, 2* Craig Johnson, PhD3, 4

Benchmarks and the Context for Their Application

Having laid out a strong justification for treating AN as a complex set of deterministic processes and for adopting a comprehensive attitude toward its treatment, we come to what may seem a technically simple question: What definable benchmarks can be sensibly used to determine when a course of outpatient treatment in AN has reached its limit of benefit and should give way to a higher level of care? But we also hope the reader now better appreciates why the question is not so straightforward; because it’s not easily separated from the perspective taking we have been stressing, or from the connecting links between the research cited above and the keynote of this article. There are several points:

1. Even when clinical improvement is noteworthy, the continuing presence of mild symptoms should not be taken lightly as an inherent destabilizing process remains active.

2. Lack of early weight gain in outpatient therapy may place a limit on what can be achieved over time, at least in the short-term.

3. Complex processes are in play; to assume that single interventions are by themselves satisfactory is assuming too much.

4. Therapist inexperience can be iatrogenic, its effects swinging in directions that seem entirely haphazard: extreme laxity when containment is needed, rigidly enforced control when additional time is warranted to see if the treatment course can evolve without adverse consequence. And let’s not forget in this regard that a patient’s avowed enthusiasm for eating is often the last refuge for a fear that a more intense treatment is coming. This is why it is important to understand that the appearance of change is not necessarily meaningful change and why failure to recognize the distinction can have serious repercussions.

5. As illness lengthens so does its pernicious effect on physical health and self efficacy; this is why allowing low body to linger is not only inexcusable, it is dangerous. In short, it behooves therapists to be aware of observations both within and outside our field that draw attention to why it is important to set boundaries that may have practical clinical relevance.

Still, it’s easy to miss the context of the message: benchmarks will not have the consequence intended unless they are a seamless part of a larger ideology; specifically, the many premises that justify seeing AN as a complex illness requiring variable aspects of management and therapeutic approach. Benchmarks should not be treated as descriptive criteria; rather, they are elements in an overarching concept of care, transmitting knowledge about the illness and its management that patients and families should learn from. Even if they are systematically imposed they will be on shaky grounds if attempted by clinicians whose theoretical and clinical perspectives are narrow.

And there is yet another crucial point: that partial improvement in AN is often heralded as an important achievement for patients. This is a tricky issue because depending on the context of the illness and its course, it may be; in fact, it’s a more touchy and complicated matter. Patients need to feel there is hope for change and that their therapist appreciates how hard the struggle to gain weight is; even when it seems effortless it rarely is. But empathy with what is an agonizing struggle needs to be cautiously reconciled with the danger of complacency. Many times we hear patients say—their therapists too—that the illness has been stable for some time; that this is a good thing given how bad things used to be. Perhaps, but stasis is not justification for complacency, especially when the patient is a child or young adult. As the research just highlighted shows, symptoms that linger confer more than the eventual risk of bone disease and relapse; in time it also brings a rise in psychological inertia. We hope for a therapy that will one day prove transforming, but for now AN is frustrating because change typically comes in orders of magnitude too small to discern. It’s a clinical fact that underscores one other: as the duration of a stably low weight lengthens, insidious shaping processes are evolving that continue to feed an already ruthless self judgment, ultimately forming the belief that ‘‘I can never adapt to adult life unless I am thin.’’ And since many patients remain underweight for long periods of time while continuing in the same outpatient treatment, how can we not wonder if the eating disorder community is aware of this?

Add to this concern two more examples of how patients equivocate when they receive a recommendation that they intensify their care. They come from many hundreds of consultations (some initiated by parents, some requested by the therapist, some from patients themselves) that sought our advice on the status of a current therapy. We are referring specifically to consultations that begin with the assertion: ‘‘Things now are so much better than before.’’ Maybe so, but sometimes the words are less a comment on progress and hope for a better future than an unskillfully cloaked fear that a higher level of care is precisely what the consultant will advise. Patients may be clumsy in how they minimize the seriousness of their illness, but this doesn’t mean they lack intuition. What better way to soften the fear of being told they need something more than by ending the consultation before it begins with a pretext for why it wasn’t needed in the first place.

A second obfuscation (some related statistics to follow) is seen with patients who are not currently under treatment by a mental health professional (some having discontinued this treatment) but instead are receiving supportive care from other care givers (e.g., nutritionist, spiritual counselor, pediatrician, school guidance counselor, or nurse), often for lengthy periods in spite of negligible weight gain; it is a common scenario. Why this is begs many questions, but as AN is fundamentally a psychological/psychiatric illness, this form of solo, nonpsychological ‘‘counseling’’ is not, and should never be, a trade-off for mental health treatment, even when the patient has declined it. Many of these care givers have taken strong exception to our criticism of the arrangement, but we stand by the reproach. Apart from the incongruity (not to mention the expense) of sustaining such contact when the patient’s commitment to, or tolerance of, weight gain is nil, the idea that it is vital because it remains the only available support may be a noble one, but a contact that lacks neither reference to the facts of the patient’s psychopathology, nor one able of probing the varied, complex reasons why self-examination is shunned, only fosters the illusion that care and support is actually being given; it is not. It isn’t that the arrangement lacks benefit whatsoever; it’s that, at best, it’s a superficial one. We have known far too many patients, stable but with attenuated symptoms for many years, who ultimately paid a heavy price for the relapse that eventually came. Simply stated, it’s our view—and a strong one—that nonmental health allied care should never be initiated or continued without a patient having first established a treatment that is psychological in nature. And should that relationship end referral of the patient for consultation should be arranged immediately and the allied care should cease. Patients may refuse, but the idea that this is a de facto justification for sustaining an arrangement that offers little further therapeutic challenge is setting a dangerous precedent. The opinion may strike some as harsh, maybe even tantamount to an unethical abandonment of the patient (it is not), but as Vandereycken and Meerman note in their excellent book on AN,27 it is far better to interrupt the illusion of ‘‘treatment’’ when conditions for a genuine therapy are absent than to press forward when resistance to change is too great. How to approach the dilemma is considered below.

As the above examples imply, benchmarks serve the purpose of holding off the adverse complications that lack of weight gain, or weight decline, eventually bring. But they will have the greatest utility when they rest on a comprehensive attitude toward care, in the same way that their public health implications hinge on their wider dissemination. So we hope the reader will see accept their utility and apply them widely in outpatient practice.

Having said this, we are not claiming there is a general theory that lends validity to the benchmarks we will describe, or that implementing them guarantees that the hold AN has on patients will be decisively broken. Benchmarks are merely a frame of reference for approaching a particular problem, not a set of testable hypotheses. Still, they have an association with scientifically supported observations and because an immense amount of clinical experience provides further testimony, we believe the general rationale for their application is broadly correct and that significant adverse consequences follow when outpatient care lacks a framework of which benchmarks are a part. The time points in the algorithms described were not empirically derived, but neither are they entirely arbitrarily. Again, their objective is to avoid blunders via a pragmatic frame of reference for approaching a particular problem.

Low Body Weight and Other Foundations for Benchmarks

Obviously, the prime reason for linking benchmarks to a time line for deciding when outpatient care should transition to one more intensive is the malignant effects of unremitting malnutrition; but a brief caveat concerning the relationship between low weight and outcome warrants comment. Clearly, people who stay ill naturally have poorer outcomes, but what mediates the association of low weight and long-term outcome is not yet understood. For example, we don’t know if the mechanisms involved are at a cellular level; whether low weight is reinforced over time in ways psychological, interpersonal, or biological, or via interactions between all three; whether low weight is a proxy for other factors more discreetly linked to treatment failure and chronicity; or how many years of unremitting illness are required before recovery can be declared unfeasible. In our experience, it is common for patients and families to be told that a very low BMI is predictive of poor outcome; but as Steinhaussen14 shows, this pronouncement is incorrect. It isn’t body mass at the beginning of treatment that predicts poorer long-term outcome, it’s the persistence of low body weight that does.

Some Personal Observations as Testimony to the Need of Benchmarks

They are drawn from many consultations with both adolescents and adults, of which three stand out.

First, it is striking how many patients remain in outpatient care for extended stretches of time, from months to decades, without anyone in the treatment team ever having advised referral to a higher level of care for weight restoration and a more comprehensive treatment. And we are not referring here to patients for whom such a recommendation was made but refused.

Second, many adolescents (as well as young adults who still reside with parents) enter treatment without any assistance being offered to parents—no preparation, assistance, guidance, or discussion whatsoever, even when families were asking to participate and fully capable of doing so. The rationale typically given for separating parents from the child’s therapy—to preserve the child’s confidentiality—is difficult to defend since maintaining a strong individual psychotherapy and giving direction to parents need not be mutually exclusive.

Third, among the 226 consultations conducted by MS between January 2007 and December 2010 where treatment involved a multidisciplinary team of professionals, lack of cohesion in the team’s leadership structure along with poorly articulated rationales given for decisions that were rendered over the course of treatment were frequent complaints. Indeed, when patients/families were asked, ‘‘Who in this team is in charge, and who do you turn to for guidance?’’ there were blank stares. Moreover, critically important and complex decisions (e.g., timing of calorie changes; whether it was, or was not, appropriate to participate in exercise or recreational activities; setting of the target weight and prescribed weekly weight gain; when to back off temporarily on calorie increases to allow symptoms to stabilize; whether vacations should be permitted or delayed) were often delegated to certain members of the team without input from others and rendered without any involvement of the therapist, the effect of which was that clinical factors of central importance did not inform decision making in any logically consistent or sensible way. Indeed, the irritation of parents, ‘‘We never know who is in charge,’’ was palpable. For an illness so baffling, this state of affairs is not simply counterintuitive, it is just plain wrong. If we accept that AN is an inherently complex illness, why undertake its treatment without first laying out clear, a priori rules governing how decisions that clearly require an account of how psychological, pathological, physical issues interact will be rendered? And given that many interacting factors are at play in AN, it is imperative that all treatment decisions reflect knowledge of these deterministic trends, what they mean, and the function—in psychological terms—they serve. Naturally, certain decisions depend uniquely on the patient’s physical condition and here the physician’s authority is absolute. But outside of this general point, treatment decisions that arise often in AN can not, in our opinion, be rendered clearly without a single person guiding the process. And in our view, the single best resource for understanding the complexities at play is, of course, the therapist; but ironically, rarely is the therapist involved in this way. To the contrary, in these consultations many therapists told MS they preferred to defer management decisions to others, which, as the consultation ultimately made clear, proved a tactical and conceptual error; because for patient and family, uncertainty and mistrust arose as a result. Decision making in AN is inevitably a reactive process because it shifts as symptoms wax and wane; this is why collaborative discussion is essential. But at day’s end the clinician with the single greatest knowledge of the case and its context must construct the narrative and bring coherence to whatever overarching decisions are needed. Who else can realistically do this but the therapist? The idea that extending the therapist’s role in this way can contaminate the therapy is not new, and we are not making light of the potential for conflict. Still, we have worked conjointly with patient and family members for decades and the occasions when therapy shut down because boundaries were muddled were few. But this was because the nature, parameters, rationale, and transference implications of the arrangement were thoroughly discussed before treatment actually began.

Last, and perhaps most disconcerting in the light of what we have discussed, rarely do either patient or family receive a formal and detailed introduction to the nature of AN, including the challenges to come if treatment is to be attempted. Among the 226 families referred to above who were currently receiving outpatient care and who sought consultation with MS about the viability of this treatment, I asked whether they had received, at any time from any treating therapist, an initial consultation that discussed in depth: (a) the defining characteristics of AN; (b) what background factors precede its onset; (c) how and why it is believed to be self reinforcing; (d) why patients often state they can not accept life without it; (e) what is known about risk factors and how these factors collectively shape the symptoms that unfold; (f ) why symptoms become so resolute, and so quickly; (g) the different course patterns and outcomes the illness takes, including the risks of chronicity and premature death; (h) what bench marks would guide decisions about when to stop one treatment in order to consider alternatives; (i) how parents/significant others can assist their child/partner in managing the symptoms and in promoting weight restoration; (j) what influences in the environment are favorable, and those that might hinder progress; (k) short-and long-term medical effects; (l) and what is known at present about the value and purpose of different therapeutic modalities. To our amazement, in only two cases – less than one percent – was such a comprehensive pre-treatment preparation given. This is simply inexcusable.