Communication Commentary: Eating Disorders: Wasting Away: Communicating with the Eating Disorder Patient
The most important thing in communication is hearing what isn’t being said.Anonymous
Individuals who suffer with an eating disorder often offer special challenges for the clinicians who work with them (1). Not uncommonly, patients with anorexia nervosa are not in agreement that they even have a disorder, let alone that they want to be cured of it. For a patient who secretly desires to maintain their disorder, and not their weight, the provision of patient-centered care presents a complex challenge. Engagement, involving the patient in shared decision-making, and gaining a shared set of goals may become interwoven with an unspoken battle of wills. Some patients perfect increasingly creative and secretive methods to ensure that they are not compelled to gain weight, while clinicians strive to become increasingly sophisticated at identifying these “tricks” (1, 2). Further impeding collaborative treatment, body image distortions are not typically amenable to rational arguments—even if provided in a highly compassionate manner. Individuals whose brains are in starvation often lack the ability to make sound decisions. When convictions are not amenable to logic, and the patient’s life may be at stake, the desired level of collaboration in treatment decisions may be impossible. However, the quality of the patient-clinician relationship often determines if a patient remains in treatment or drops out, making the therapeutic alliance all the more important. A great deal of clinical acumen and empathy are required to engage the “difficult” eating disordered patient (3).
Individuals search the Internet for a variety of reasons, such as seeking information, health-related resources, interactions via social media, and web-based support groups of like-minded people. Online health-related discussion boards may encourage participants to take an active interest in their well-being and to adopt a more health-conscious lifestyle (4, 5). With the blossoming of health-related websites, those who may condone or advocate for less healthy or even self-destructive behaviors have emerged. For the individual who is preoccupied with body image and seeking support for her/his beliefs, there is the pro-anorexia movement Internet discussion boards. The “pro-anas” websites propose that self-starvation is not a disorder needing to be cured. Rather, restricting food intake is depicted as a method of demonstrating willpower and freedom from the high consumption, materialistic society that surrounds them—an “experiential and aspirational” state (6). Although many of the pro-anorexia websites have been closed due to complaints from the media, parents, eating disorder support groups, and those in recovery from an eating disorder, some “pro-anas” sites have proved resistant to eradication. Tierney has researched the pro-anorexia web presence and has suggested that there may be both pros and cons to these websites for individuals with anorexia nervosa. On the negative side, support is given for individuals planning a fast, methods of weight loss and maintaining resolve are shared, starvation may be romanticized as a method of spiritual cleansing, and there is often criticism of the medical community, family, and friends who would attempt to coerce treatment. On the positive side, some sites provide support for the individual who feels different and alienated from peers, family, and the health system because of their beliefs. There is the comfort of like-minded individuals and the freedom to honestly express feelings, thoughts, and concerns in a noncritical forum. For an individual who has become increasingly withdrawn and isolated, this forum may be their one connection to other humans (7).
Clinical Vignette
Jeanette Smith crept into the waiting area of the psychiatrist’s office, her mother closely trailing her, her hand planted against Jeanette’s back to maintain her forward movement. Jeanette was dressed in sweat pants, a baggy pink hoodie with the hood pulled up around her sunken cheeks. Her nails were nicely manicured with bright pink polish embellishing her pale thin fingers. Her mother accompanied Jeanette to the receptionist. Her mother was the one who spoke, giving Jeanette’s name and appointment time. Jeanette was sitting rigidly in her chair with her leg bobbing up and down rapidly when Dr. King emerged from the office to invite her in. Jeanette shook Dr. King’s hand limply as she slumped into the office. Her mother gave Dr. King a final pleading smile as the door closed in front of her.
Dr. King smiled encouragingly at Jeanette, as she grinned politely back. Jeanette answered questions briefly with an unwavering pleasant and indecipherable smile. She reported that she was 17 years old, in the 11th grade, an honors student, and that she enjoyed running and ballet. She was not sexually active, did not use drugs or alcohol, and did not engage in high-risk behaviors. She explained that her mother is a “worrier” who has been hovering over her for her whole life. “What I eat is just her newest thing to worry about,” Jeanette explained matter-of-factly.
“Yes, I had noticed that the appointment was your pediatrician’s idea and your mother made the call. You really would just as soon tell me what I want to hear and be done with me—correct?” Dr. King noted with an empathic smile and a glint of humor in her eyes.
“No offense, Dr. King, but I really prefer more of a natural lifestyle. I don’t believe in medication,” Jeanette said resolutely.
“Oh,” Dr. King said with a hint of surprise in her tone. “I don’t think I mentioned medication. I was just hoping to get to know you.” Jeanette’s pleasant smile re-emerged.
“Okay,” she replied sweetly.
When asked about her weight, Jeanette admitted that she had lost some weight over the past year. “I eat healthy food,” she explained. When asked to step on the scale, Jeanette appeared apprehensive. When her weight was recorded, Jeanette’s eyes widened and her pleasant smile evaporated.
“We usually have patients weighed with their back to the scale, but I wanted to let you know our protocols before springing them on you. Do you weigh more than you expected?” Dr. King queried.
“Oh, just a little bit,” Jeanette admitted.
“You are still at only 81% of ideal body weight—that is considered severely underweight. Did you drink a lot of water before you got here?” Dr. King asked curiously.
“Some,” Jeanette answered.
“That probably explains it. Do you need to use the restroom?” Dr. King asked, pointing down the hall.
“Are we done with the weight?” Jeanette asked, a glint of suspicion in her eyes.
“Yes,” Dr. King reassured.
Upon Jeanette’s return to the office, Dr. King asked about friends, Internet use, websites, social media, and chat groups. Jeanette said that she had lots of acquaintances from school groups, sports, and dance, but she didn’t hang out with them after school. “I’m too busy with my schoolwork,” Jeanette explained.
“You’ve been less social lately?” Dr. King questioned matter-of-factly.
“Sure, it is my junior year and I have to do well to get into a good college,” Jeanette answered emphatically. When asked specifically if she had visited any websites or chat groups about eating disorders or anorexia, Jeanette looked at the corner of the desk as she replied, “I looked at one of them once. I was just curious.”
“Did you find someone that you felt connected to from that website?” Dr. King asked.
“One girl,” Jeanette admitted. “It’s weird. We really seem to understand each other. I mean, it’s like we’ve known each other for years,” Jeanette mused.
Dr. King smiled and nodded. “And what tricks have you learned about disguising your weight besides drinking lots of water?” Dr. King asked, no hint of criticism in her voice.
“Well, there are lots of them, but I haven’t tried them,” Jeanette explained.
“But you probably will be tempted to,” Dr. King noted.
“Well, there is a game called ‘fool the doctors,’ some people on the site like to play. It’s actually kind of funny what they come up with,” Jeanette admitted.
“Yes,” smiled Dr. King. “But I prefer honesty and being genuine to games and tricks. I do hope that you won’t play that game,” Dr. King said, this time her expression serious and concerned.
“I’ll try not to,” Jeanette answered, her face also serious. “No tricks from you, either—Ok? Like sending me to the hospital or some such treachery.”
“We will decide the treatment based on your health and honesty. You will then have complete control over whether you need to be in the hospital or not. No surprises. Deal?” Dr. King asked hopefully.
“Deal,” Jeanette replied.
Challenges of Engagement for Individuals With Eating Disorders
The individual presenting for treatment of an eating disorder, particularly a restrictive type, is often coming for treatment at the behest of family, friends, or primary care providers. Studies of the perspectives of service users regarding treatment for their eating disorders have found that interventions that focus exclusively on weight gain are viewed negatively, whereas a holistic approach in which underlying issues are addressed is highly valued (8–10). Individual psychotherapy and counseling are generally viewed most positively, followed by group therapy and then family therapy. Self-help groups are generally viewed positively, and medical interventions/medication generally viewed negatively (8–10). As is seen in the treatment of many disorders, a positive therapeutic relationship is an important predictor of patient satisfaction and may improve treatment adherence and outcome (11–13).
A recent study by Escobar-Koch and colleagues compared service users’ perspective on eating disorder treatments and services between the United States (144 participants) and the United Kingdom (150 participants) via qualitative and questionnaire techniques. Results confirmed that the service users considered the following to be essential:
•
the quality of the therapeutic relationship,
•
the value of a holistic approach to treatment,
•
individual psychotherapy or counseling as the preferred therapeutic intervention,
•
treatment provided by eating disorder specialists,
•
the provision of individualized care,
•
the ability to actively participate in treatment decisions, and
•
the importance of support by family and significant others as well as professionals in the process of recovery.
Service users had notable concerns regarding access to specialized care in both countries—primary care physicians’ lack of knowledge about eating disorders, the inability to access care unless severely underweight, and poor insurance coverage in the United States and poor availability in the United Kingdom, with waiting lists and poor early intervention services identified in both sites (14).
The Role of Communication
Bensing and colleagues proposed that it is the doctor-patient communication—the reciprocal sharing of knowledge, preferences, and priorities that leads to a negotiated treatment plan—that is the key to ensuring high-quality care while optimizing patient engagement (15). For the difficult-to-engage patient and the individual who is ambivalent about treatment, this may be even more important. Some of the individuals frequenting the “pro-anorexia” websites have specifically identified their fear of coercion and loss of control as a primary reason to seek information and camaraderie through the Internet (7). Clear and honest communication between providers and the individual with a restrictive-type eating disorder may be particularly important, as the need for control has been identified as a frequent characteristic of individuals suffering from this disorder (3). It is important for the physician-clinician to state upfront what is and is not negotiable in treatment and to provide a forum for open discussion about treatment options. Individuals recovering from eating disorders have expressed an appreciation for being given options as well as clear parameters of when their preferred option of treatment was not working and a change in tactics was in order. “No surprises” is a frequent request, with the ability to trust caregivers’ communications regarding the decision-making process as one of the essential components of a therapeutic alliance (11–13). Specialized expertise, the ability to listen to and take into consideration the individual’s uniqueness and preferences, and honesty were identified as particularly important to individuals with eating disorders with respect to treatment engagement (8).
Tips for Enhancing Communication With Individuals in Treatment for Eating Disorder
High-quality information about the eating disorder and effective treatment options shared between the clinician and the patient allows for collaboration in decision-making about medical care. Discrepant expectations of the efficacy of potential interventions between clinicians and patients have been found to increase the risk of an eating disorder patient dropping out of treatment (3, 14). Clear sharing of treatment expectations, with clarification of areas of discrepancy between physician/clinician and patient, is a key aspect of improving adherence to treatment and improving therapeutic rapport (10). During the course of effective eating disorder treatment, Benbenishty and Schul found that the gap between expectations and perceived reality among patients and therapists tended to diminish with time (16). Often the eating disorder patient’s wants, needs, preferences, and fears need to be “translated” from discussions, body language, and questions to help the physician understand the patient’s priorities around care options. The following communication tools may be helpful to building a therapeutic alliance with the eating disorder patient:
1.
Educate the patient about her/his diagnosis in lay terms.
2.
Provide information about treatment philosophy, protocols, and methods from the beginning. Often it is helpful to have something written, in addition to a discussion, so as to allow for patient review later.
3.
Honestly discuss limitations of confidentiality (especially if the patient is a minor) and choices the patient has regarding treatment. Also make clear the criteria for a change in treatment approach or need to employ a higher level of care.
4.
Discuss the importance of being able to discuss treatment expectations openly, as unmet expectations or differences between the patient and clinician regarding expectations often interferes with the collaborative work.
5.
Stress the need for honesty (by both parties) in the formation of a trusting treatment relationship, which is essential for treatment progress.
6.
Listen to the patient’s life narrative as it relates to the presenting problems. Reassure the patient that it is her/his life, and not just her/his disorder, that is important in the relationship.
7.
When possible, co-construct the treatment plan with the patient, including a prioritized stepwise plan, to ensure clarity of choices and joint agreement on care decisions.
8.
Ask the patient regularly how she/he feels the treatment is going, and discuss impediments to the treatment alliance.
References
1.
Fleming J, Szmukler GI: Attitudes of medical professionals towards patients with eating disorders. Aust N Z J Psychiatry 1992; 26:436–443
2.
Crisp AH: Anorexia Nervosa: Let Me Be. London, Academic Press, 1980
3.
Clinton DN: Why do eating disorder patients drop out? Psychother Psychosom 1996; 65:29–35
4.
Cline RJ, Haynes KM: Consumer health information seeking on the Internet: the state of the art. Health Educ Res 2001; 16:671–692
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Goldsmith J: How will the Internet change our health system? Health Aff (Millwood) 2000; 19:148–156
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Fox N, Ward K, O’Rourke A: Pro-anorexia, weight-loss drugs and the internet: an “anti-recovery” explanatory model of anorexia. Sociol Health Illn 2005; 27:944–971
7.
Tierney S: The dangers and draw of online communication: pro-anorexia websites and their implications for users, practitioners, and researchers. Eat Disord 2006; 14:181–190
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Bell L: What can we learn from consumer studies and qualitative research in the treatment of eating disorders? Eat Weight Disord 2003; 8:181–187
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Pettersen G, Rosenvinge JH: Improvement and recovery from eating disorders: a patient perspective. Eat Disord 2002; 10:61–71
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de la Rie S, Noordenbos G, Donker M, van Furth E: Evaluating the treatment of eating disorders from the patient’s perspective. Int J Eat Disord 2006; 39:667–676
11.
Clinton D, Bjorck C, Sohlberg S, Norring C: Patient satisfaction with treatment in eating disorders: cause for complacency or concern? Eur Eat Disord Rev 2004; 12:240–246
12.
Rosenvinge JH, Klusmeier AK: Treatment for eating disorders from a patient satisfaction perspective: a Norwegian replication of a British study. Eur Eat Disord Rev 2000; 8:293–300
13.
Gallop R, Kennedy SH, Stern D: Therapeutic alliance on an inpatient unit for eating disorders. Int J Eat Disord 1994; 16:405–410
14.
Escobar-Koch T, Banker JD, Crow S, Cullis J, Ringwood S, Smith G, van Furth E, Westin K, Schmidt U: Service users’ views of eating disorder services: an international comparison. Int J Eat Disord 2010; 43:549–559
15.
Bensing JM, Verhaak PFM, van Dulmen AM, Visser AP: Communication: the royal pathway to patient-centered medicine. Patient Educ Couns 2000; 39:1–3
16.
Benbenishty R, Schul Y: Client-therapist congruence of expectations over the course of therapy. Br J Clin Psychol 1987; 26:17–24
Information & Authors
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Published online: 1 January 2014
Published in print: Fall 2014
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Dorothy E. Stubbe,M.D., Associate Professor and Program Director, Yale University School of Medicine Child Study Center, New Haven, CT
Dr. Stubbe reports no competing interests.
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