Clues to motivating patients who avoid or refuse treatment
Just like Lord Byron’s fictional prisoner of Chillon, some eating disorders patients have “chains” that keep them from seeking treatment. Researchers at the University of Adelaide report that “a cultural context of care” can play an important role in a patient’s decision to avoid or refuse treatment (J Eat Disord. 2016; 4:36).
Of the 1 million persons with eating disorders throughout Australia, only about 30% seek treatment. A movement toward recovery-oriented practice and service delivery in Australia is a central theme in the Australia and New Zealand College of Psychiatrists Clinical Practice Guidelines for Treating Eating Disorders. This framework of recovery takes into account the patient’s experiences beyond the typical framework and guidelines of medical and clinical recovery.
Dr. Connie Musolino and her colleagues used observations, ethnographic fieldwork, and psychological evaluation to study 28 women with disordered eating. Twenty eight women from 19 to 52 years of age participated, and 90% met the criterion for an eating disorder; most fell into the Other Specified Feeding or Eating Disorder (OSFED, formerly EDNOS) category and 2 met the criteria for anorexia nervosa. Of these, 28, 21 completed the EDE and the mean Global EDE was 3.48—so severity was high.
Some reasons for avoiding treatment
The participants were asked to describe their reasons for avoiding treatment. Many of the women described their eating disorders as “a safe place.” When interviewed, the women expressed a feeling of safety with their disorders, for example, by using the same plate at all meals, eating “safe foods,” and maintaining the same daily routine. For example, a 27-year old woman who had diagnoses of EDNOS and AN explained that even though she was panicky and anxious, adopting a rigid routine made her feel calm. Others described their eating disorder as “a safe and familiar place.” Some hid the disorder in a cultural context, turning to the benefits of being lean and dieting. Others claimed that they had food allergies, needed special diets, or were intolerant of a special list of foods. Among others there was a sense of pride in taking care of the problem themselves.
To maintain their disordered eating patterns, participants used high levels of self-discipline and found a sense of safety and pride in starving themselves, and using binge eating and purging. Their definition of care was, for example, adopting a strict vegan diet to avoid obesity or starving to shrink their bodies to avoid unwanted sexual attention. These actions posed real obstacles to seeking any treatment that might lead to recovery. The women’s cultural understanding of healthy eating and exercise, directed from constant bombardment of cultural imagery promoting health and self-discipline, seemed morally superior and made the very concept of recovery seem contradictory and defeating.
One implication, according to the authors, is the importance of working to develop a shared understanding with patients about the underlying function of their eating disorder. This path might help avoid conflicts and provide a pathway for patients to seek and accept treatment. Discussing how disordered eating practices are embedded in self-care, health, eating and body practices may enhance the patient-therapist relationship.
Interestingly, considering ED symptoms form a self-care perspective might be viewed as dovetailing with recent, often neurobiologically oriented research examining negative and positive reinforcement as processes that maintain eating disorder symptoms