A 31-year-old woman named Monica recently died from anorexia nervosa (AN) following a 15-year battle with the disease. Her death is an eerie reminder of what we already know: eating disorders are dangerous, deadly, and difficult to treat. Traditional treatment for AN typically takes 5-7 years. Less than half of patients with AN will ever fully recover, and of those who do recover, one-third will relapse. Nearly 20% of patients with AN will die as a result of their illness.
Just a decade ago, only 30% of patients fully recovered, and now nearly 50% will fully recover. The reasons for the improved prognosis include greater awareness about eating disorders, which leads to earlier diagnosis and treatment, and the advent of more effective, evidence-based treatment for adolescent AN, such as Maudsley Family-Based Treatment. But early diagnosis, early intervention, and the Maudsley method primarily benefit adolescents. Consequently, I would presume that the 20% increase in recovery rates over the past decade is primarily due to the recovery of more adolescents, not the recovery of more chronically-ill adults.
Although AN typically begins in early adolescence, those who die from the disease are more often adults who have battled it for many years. The most effective course of action is early diagnosis and aggressive, evidence-based treatment as soon as symptoms appear. Unfortunately, there are countless adults with AN who have struggled for years or even decades. As of this time, there are no evidence-based treatments for adults with AN, nor are there any medications which have been proven to benefit adults with AN. CBT has been shown to be moderately beneficial in preventing relapse in weight-restored AN patients but shows no benefit in underweight anorexics.
A lot of the AN treatment offered today is outdated and ineffective. Fortunately, however, there are more and more clinicians and treatment centers who are adopting modern, evidence-based approaches to treating adolescent AN that have much higher success rates. For example, the Kartini Clinic, the UCSD 5-Day Intensive Family Program, and the Children’s Hospital at the University of Chicago have adopted a highly-practical family-based, evidence-based approach to treating adolescent AN based on the Maudsley Method.
We can learn a lot from the success of these adolescent programs. I believe that we can use the basic principles of Maudsley FBT and the philosophy of these adolescent treatment programs to develop effective treatments for adults. Medicine, psychology, and psychiatry do this all the time in the reverse; that is, they extend effective adult treatments to adolescents. If a particular medication or psychotherapy approach demonstrates effectiveness in adults, clinicians automatically begin using it in adolescents, often without any research data to support its use in this population. Clinical trials are then conducted on adolescents, and research data follows.
Consider the basic principles of Maudsley FBT:
1. Conceptualization of AN as a biologically-based brain disorder of unknown origin
2. Externalizing the illness
3. Viewing family members as vital resources in a patient’s recovery
4. Recognition that most of the symptoms of AN are direct result of malnutrition and thus will abate after weight restoration
5. Focus on nutritional rehabilitation and weight restoration as non-negotiable first priorities in treatment
6. Acknowledgment that patients with AN are unable, in the acute phase of illness, to make healthy decisions regarding food and weight
7. Coaching parents to provide emotional and nutritional support to their child
8. Addressing psychological symptoms and other comorbid disorders after weight restoration
Which of these principles are irrelevant in the treatment of adults?
I see no logical reason why we cannot use Maudsley FBT in the treatment of adults with AN. Based on the patient’s circumstance and living situation, spouses, roommates, friends, or significant others may be enlisted for meal support in lieu of parents. The specific details may need to be tweaked in order to be relevant to an adult patient’s situation, but the general principles would remain the same. After all, the physical and psychological symptoms of AN are the same regardless of whether the patient is an adolescent or an adult. AN stunts growth and development and prevent sufferers from becoming independent, fully-functional beings. Thus, adults with AN are regressed physically, sexually, and socially to the point that they often resemble adolescents anyway.
The differences that do exist between adolescent and adult forms of AN are not inherent to the disease itself or even to the age of the patient. Rather, they are imposed by society. We, as a society, have arbitrarily determined that teenagers are fully responsible for their own healthcare decisions once they reach their 18th birthday. This is the case regardless of whether the patient has an ego-syntonic, anosognosic condition such as AN which impairs their judgment and insight. By virtue of their illness, adults with AN are unable to make healthy decisions for themselves. And yet, the law prohibits parental involvement, even parental notification of treatment, unless the patient signs a release. The law clearly sides with AN, not with the patient.
Family support and family involvement are powerful predictors of good outcome. Unfortunately, most therapists consider parental involvement in an adult patient’s treatment unnecessary or even detrimental. These therapists believe that the etiology of AN is rooted in controlling parents, separation anxiety, and issues related to independence and autonomy. Thus, they keep patients separated from the very people who love them most and who may be best equipped to help them achieve full recovery. This is counterproductive because a patient’s physical and psychological wellbeing must always take precedence over the developmental issues of emerging adults which, incidentally, have never been proven to be causally related to AN. Adult patients’ lives are threatened as a result of ignorant adherence to an unproven theory.
I firmly believe that Maudsley Family-Based Treatment can be effective in young adults. In fact, I have used this approach with young adults in my practice with great success. I have seen patients who have been sick for a decade, hospitalized multiple times, and endured several courses of ineffective residential treatment finally achieve recovery as outpatients through FBT. I look forward to the day when FBT is widely available to adults, as well as adolescents, with AN.