Best Practices for Working with Experienced and Complex Patients
Lisa Petersen, PhD
Eating Recovery Center of California
Jennifer Lombardi, LMFT
National Recovery Advocate
Eating Recovery Center of California
Eating disorders are pernicious illnesses. Many patients struggle for years—even decades—alternating between treatment episodes, brief windows of recovery and relapse. Clinical definitions of complex and experienced patients vary—they are referred to as chronic, treatment resistant, ambivalent, unmotivated and non-responsive. Despite the diversity of description regarding these patients, their illness progression is remarkably similar. Over time, the eating disorder pathology becomes more complex, the patient’s mastery of their illness increases and the likelihood of full recovery decreases. In fact, recent research indicates reduced rates of recovery after five to seven years of onset of the illness.
Complex and experienced eating disorder patients can be very intimidating to treatment providers—they can be scary, disruptive and combative, challenging confidence and eliciting treatment fatigue and hopelessness in the most dedicated and experienced of providers. Despite the bleak outlook of the data, there are “outliers” in this patient population—those that have reached this plateau but continue to come back to treatment and engage with the process only to repeatedly “fall off the cliff.” When working with these patients, it is imperative to find a way to reach them effectively while continuing to manage and address the potential issues with this patient population related to medical and behavioral stability, emotional status and quality of life issues. Understanding basic definitions, common challenges and treatment strategies can help providers successfully work with complex and experienced patients.
Treatment As Usual (TAU)—Definition and Challenges
As the name indicates, Treatment As Usual (TAU) is the standard approach for treatment of an eating disorder. APA criteria includes:
- Medical and behavioral stabilization. In general, the goal of weight restoration in higher levels of care is 90 to 95 percent of Ideal Body Weight, as well as normalization of labs and vitals and behavioral disruption/abstinence.
- Combination of therapies. Evidence-based treatment approaches for eating disorders often include Cognitive Behavioral Therapy (CBT), Dialectical Behavior Therapy (DBT), Acceptance and Commitment Therapy (ACT) and Family-Based Treatment (FBT, for adolescents and families).
- Return to longer-term aftercare—Following medical and psychiatric stabilization and interruption of behaviors at a higher level of care, patients will return to the outpatient treatment setting to manage chronicity of behaviors and impact over time. Additionally, they will address “other” recovery issues, including trauma/grief, interpersonal/attachment styles and developmental/phase of life issues.
Despite wide acceptance of TAU among the eating disorder treatment community, there can be challenges with this approach when working with complex and experienced patients:
- Readmissions—Patients don’t stay well following discharge. Often, the “other” recovery issues addressed in the less structured outpatient setting are triggering, while some patients struggle to manage the serious and chronic medical complications that accompany a lengthy battle with an eating disorder. Providers often refer to this as a “revolving door” effect.
- Qualitative versus quantitative progress—Patients’ “numbers” (weight, labs and behavior frequency), may improve, but they are still not at a place of recovery. Often, these numbers don’t justify keeping patients at a certain level of care despite an obvious lack of readiness to step down, and providers struggle to figure out how to keep the patient safe with adequate and appropriate care.
- Treatment fatigue—Simply put, recovery is exhausting. Engaging in the important emotional work of recovery is exhausting. Protecting and maintaining recovery following discharge is exhausting. Relapse and return to treatment is exhausting. Treatment fatigue is often confused with a lack of motivation or hopelessness.
- Hopelessness—Among patients, families and treatment teams, hope diminishes over time as the patient continues to relapse. While hopelessness affects a patient’s ability to engage meaningfully in subsequent treatment episodes, it also has a huge impact on family members and their willingness to support their loved ones and participate in the ongoing recovery journey. Mental health professionals also struggle to rally in moments in which they are tired and feel hopeless for a patient. At these moments, it can be helpful to consider successes in the bigger picture and commit steadfastly to the notion that full recovery is possible—challenging maybe, but still possible for anyone.
If Not TAU, Then What?
Treatment providers working with complex and experienced patients can begin to feel “stuck” and become discouraged when patients continue to relapse. In the face of this anxiety, a typical provider response is to shift focus to patient motivation—in other words, their readiness, willingness or ability to sustain lasting recovery. This well-meaning approach to patient motivation overly emphasizes cognitive and verbal commitment while overlooking actual ability and action. They still keep coming to treatment, they still keep asking questions, they still keep trying for recovery. It is important to distinguish treatment fatigue from true defiance. Among complex and experienced patients, they are more often highly ambivalent than unmotivated. Even so, readiness can still be an issue at times.
When working with complex and experienced patients, there may be calculated moments when it can be beneficial to veer off the traditional path recovery path of TAU. To do so, a provider must be very familiar with patient, their illness history and how their body responds to behavioral change. Wonderlich identified six key elements of a flexible treatment approach. These strategies are not necessarily different than those employed with a new patient or someone that is young in their illness. However, these best practices have been found to be particularly effective when used in complex and experienced patients.
- Multidisciplinary treatment team—No matter the level of care or treatment setting, patients and families benefit from a treatment team with several clinical perspectives. Collaboration among psychiatric, psychological, dietary and medical professionals allows multiple sets of eyes to review and interpret the same information. Teams can bounce ideas off of one another related to the course of treatment while also helping to manage the anxiety that can emerge as treatment providers working with challenging cases.
- Review treatment history—Again, a departure from TAU must only be used by providers that are very familiar with the patient. Even when treatment teams know the patient, family and course of the illness very intimately, a thorough review of treatment history is imperative before making changes in the course of treatment. A new pattern may emerge, a new idea may arise—providers must be open to change and flexible about what treatment looks like. After all, isn’t this what we ask of our patients when they engage in treatment?
- Identify the medical “threshold”—Each patient with a long-standing eating disorder has a different medical threshold—in other words, the ways in which their body responds physically to behavioral change (ie. weight, labs and behaviors). If the treatment team is considering something different to support the recovery of a complex or experienced patient, medical stability always trumps the new treatment strategy. Often times, providers must wait until patients are well enough to try something new, even if it’s a small change.
- Include support system—Over time, eating disorders become tremendously isolating and patients develop intense shame about their illness. Patients will often go to great lengths to hide their illness from their supportive networks, while others feel like a burden when they continue to ask their people for support as they seek treatment or maintain/protect recovery. Regardless of the proposed change in treatment approach, involvement of support systems is invaluable. Providers may need to be creative about engaging supportive persons and identifying how they can play a meaningful role in the phase of recovery.
- Collaborative relationship—The temperament of many patients results in a natural resistance to change, and a lack of provider flexibility leads to avoidance of full treatment engagement. Be willing to modify treatment goals within reason. Experienced patients need to feel that their providers understand the adaptive function of this illness, that their treatment teams know who they are beyond their illness. They don’t want an inflexible use of theory and they don’t want to feel invalidated. When used carefully, humor and sarcasm can offer some levity to help with fostering a collaborative spirit, particularly in times of stress or resistance.
- Focus on quality of life—Patients struggling with eating disorders over many years often have impaired life skills, and they are unlikely to shift or proactively address these impairments on their own outside the treatment environment. In addition to stabilization, interruption of behaviors and normalization of eating patterns, any treatment approach must address quality of life issues as well, even if they seem “less important.” Consider routine socialization and values identification. Additionally, finding hobbies and activities that focus on mastery and cognitive stimulation can help channel the mastery with which they have approached their eating disorders into other activities, occupying space that was taken up by the illness.
Battle Versus Buying Time
Providers working with complex and experienced patients are familiar with the “battle”—their patients are often very educated about their illnesses and lobby tirelessly for a departure from TAU based on their perception of recovery experiences. While their suggestions must be considered and evaluated in the context of their history, providers can consider trying a proposed strategy for a predetermined window. If it works, great—if not, providers have concrete evidence that the new strategy did not work and TAU is the course. Flexibility and collaboration can “buy time” when patients are scary or frustrating, giving providers an opportunity to step away, calm down, think through the case and contemplate the next step in the course of care.
Managing Experienced and Complex Patients in a Group Treatment Setting
Experienced and complex patients can be scary, frustrating and disruptive in group treatment settings at all levels of care. When these patients fist come into treatment, there is often a “pebble in a pond” effect in the treatment community based on the labels of “complex,” “experienced,” “chronic,” “resistant,” etc. It is important to listen to the chatter when a patient returns to the milieu, addressing concerns, reassuring that “it will be okay” and proactively managing harm reduction.
To reiterate, departure from TAU should only be explored for complex, experienced patients with whom providers are very familiar. These patients may be complex, frustrating and even scary at times, but they are not untreatable. Experienced patients can and do recover from their eating disorders every day with the support of dedicated, compassionate, creative and flexible providers.
Learn more about collaborating with the Eating Recovery Center family of programs in the treatment of complex and experienced patients, call 877-920-2902, email info@EatingRecoveryCenter, or chat live with an eating disorder clinician at www.EatingRecoveryCenter.com.