Reading this article about chronic eating disorders and treatment resistance left me rather depressed. To some extent, chronic eating disorders aren't exactly the most uplifting thing to think about, and I didn't expect this type of article to give me the warm fuzzies. But after reading this article, I wanted to find myself a Prozac salt lick. I mean, holy leaping downer, Batman!
But the more I thought about this article, the more my depression became anger and, yes, a reasonable helping of confusion.
The article, from Psychiatric Times*, was an examination of the issues presented by chronic, treatment-resistant patients. It seemed to me that this piece raised the same issues as an article about palliative care for anorexia by Michael Strober, although in a slightly less technical way. Write authors Alan Kaplan and Kate Strasburg:
There is an ego-syntonic pursuit of thinness in patients with eating disorders; what clinicians see as symptoms to be treated, patients see as lifestyle choices to be pursued. Issues of trust are prominent in patients with anorexia nervosa. As a consequence, these patients have difficulty in establishing a therapeutic relationship.I'm not against focusing on quality of life issues as a way to start engaging someone in therapy; in fact, as the symptoms themselves can be egosyntonic (or at least partially so), it makes sense that a therapist might want to start helping a patient look at ways to improve their life. But not as a replacement for reducing--and eventually, working to eliminate--eating disorder symptoms. Because as long as ED symptoms are present, quality of life is going to be very, very low. No one would attempt to treat cancer without removing the tumor, so why you would address anorexia without addressing the low weight is really, truly, utterly beyond me.
The change in focus to quality-of-life issues and away from ego-syntonic symptoms helps solidify the therapeutic alliance with caregivers and tends to decrease the power struggle that so often characterizes the relationship that develops. Strober outlines interventions that are useful for clinicians who treat these patients. Most important, he emphasizes the necessity of reassuring the patient that weight gain is not a primary objective and that steps toward weight gain are both collaborative and negotiable. Similarly, nutritional improvement should only be addressed once a therapeutic alliance is well established.
When efforts are made for weight gain, the goal may be to achieve a safe weight that is acceptable to the patient and compatible with medical stability and staying out of the hospital. Collaboration between therapist, dietitian, and patient is essential before the implementation of any nutritional changes. A caloric goal of about 1200 kcal per day is often useful because it can be achieved by most patients and will not lead to significant weight gain but may be adequate for medical stabilization. Liquid supplements can reduce the osmotic load that accompanies the intake of solid food and that causes bloating and fluid retention in emaciated patients with anorexia nervosa. Such patients require medical monitoring by a primary care physician, including a full medical examination, regular laboratory measures, and ECGs.
I think Dialectical Behavioral Therapy (DBT) takes the most optimistic and realistic approach to achieving behavior change. DBT assumes that patients would want to get well if they could. Their illness (be it Borderline Personality Disorder or what have you) makes it difficult for them to want to get well. So the treatment providers take on that desire for the patient until the patient is able to do so. When ED patients don't improve in outpatient therapy, it's usually chalked up to "they don't want to get better" rather than "they are unable to get better." Another DBT tenet is: patients don't fail therapy; therapy fails patients. Of course people with eating disorders are treatment-resistant. It's almost part of the definition, just like people with depression are sad and people in the manic stage of bipolar disorder are hyper-energetic.
I think SO MUCH progress could be made in treating eating disorders if we stopped conflating treatment resistance with not wanting to get better. People with eating disorders do want to get better, it's just that their illness makes them unable to want to get better. Treatment resistance is as much a symptom of ED as restricting, binge eating, and purging.
In a previous blog post, I quoted Dr. Sarah Ravin and feel that it's worth repeating:
"I view [palliative care for AN] as a manifestation of both failure and inferiority. Failure on the part of professionals who fear an emaciated patient’s wrath more than they fear her death. Failure on the part of a profession which espouses the dogma that avoiding premature termination of treatment is more important than avoiding premature termination of the patient’s life. Failure on the part of a philosophy that values nurturing the therapeutic relationship more than it values giving a patient a fighting chance at life, health, and happiness. These patients have not failed treatment. Treatment has failed them."
And yet, I can't imagine how humbling it must be for a clinician to have to accept that they might not be able to do anything for their patient. Not because they don't want to help, but because our culture is not equipped with the challenges of treating eating disorders. It's not. We expect people to be able to choose to eat. We expect that weight restoration will cure the eating disorder. We expect people to want to get better. We expect people to ask for help when they need it. We expect people to be rational enough to make responsible decisions. Which are good assumptions, most of the time. An ED isn't most of the time.
The longer an eating disorder has gone on, the harder it is to treat. And not all EDs will respond to currently available treatments. These are facts. A long-term eating disorder may very well change what recovery looks like, and what constitutes a return to a productive life, when compared to a young teen who has only been ill for a few months. Many illnesses are the same way, be it diabetes, heart disease or cancer. Many illnesses also don't have a "cure," just like eating disorders. Maybe someone who has had untreated diabetes for quite some time will have more difficulties in managing their blood sugar. Maybe it will fluctuate more, and maybe they'll need more intensive monitoring to keep things stable. They might even resist all of the blood sugar testing and doctor's appointments. But that doesn't mean we throw up our hands and say "Sorry, pal. You're on your own."
People with eating disorders already feel hopeless. The last thing I or anyone else needs who is struggling with an ED is to be told that the best thing we can do for you is prolong your miserable life a little bit longer until the ED kills you anyway. Maybe your miserable life will be a little less miserable because we've dealt with Quality Of Life Issues, but that's what you wanted. Um, ouch. I needed clinicians and caregivers to believe in me and my recovery, to say that there is not one reason why you can't get better, to want my recovery for me until I could want it myself. I still need people to believe in me and my life and my ability to get better.
Ultimately, what this article says is that we suck at treating chronic eating disorders. And no matter how you slice it, that's pretty depressing.
*I swear they're not paying me to promote their journal. Although I'm open to monetary donations should they (ahem) feel so inclined (ahem ahem).