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Palliative care for EDs?

Posted Sep 06 2009 10:02pm
Dr. Sarah Ravin's latest blog post, titled " Palliative care for anorexia nervosa?" really got me thinking. Dr. Ravin's blog post was based around a 2004 journal article by Michael Strober titled " Managing the chronic, treatment-resistant patient with anorexia nervosa," an article that gave both of us the heebie - jeebies. In the article, Strober articles that people with long-term, chronic anorexia who have failed at previous treatment attempts should be allowed to refuse treatment and essentially receive end-of-life care.

Writes Dr. Ravin:

"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."

Besides a hearty "hear, hear!" for Dr. Ravin, I realized what my major issues were with this journal article and, more broadly, this point of view. And these major issues are twofold:

First off, this view supposes that a person with anorexia is making a choice not to get better. Of course, anorexia isn't a simple black and white issue of choice/no choice. It's more like making a choice when there's a gun to your head. Yes, you have free will and all of that, but that nice little Glock packs a punch, even without contacting your body. That gun is going to effect what choices you make and how you make them.

Anorexia isn't terminal, yet to a long-term sufferer, sometimes death seems preferable to recovery. When I shrieked to my first therapist that I would rather die than gain ten pounds, I wasn't kidding. And I was forty pounds underweight at the time. That's the level of agony and anxiety that even the prospect of weight gain brought me. Clearly, I wasn't rational. I wanted to refuse all treatment as it didn't seem worth it. And if someone had said, "You know, Carrie, you can avoid all of this pain and torment, we'll just keep you comfortable," that would have sounded mighty nice.

Palliative care in cancer patients is essentially predicated on the assumption that the patient is capable of making rational decisions. My grandfather, when diagnosed with advanced pancreatic cancer, elected hospice over chemo. He was in his mid-80s, had lived a full life, and chemo would extend his life by months at best. He chose quality over quantity, a decision I respect and would likely choose myself, if I were in his position. He was rational- his cancer didn't erode his cognition and ability to make sound decisions. Anorexia is different; anorexia does affect one's ability to make rational choices about food and eating, life and death.

The second issue I have with the article will follow along the lines of the cancer analogy. Chemo is brutal and painful and has some nasty side effects. Your hair falls out. You are constantly nauseous. You feel awful. But we encourage babies and toddlers to have chemo for their cancer. What kind of parent would do that? Easy- one who loves their child and has their eyes on the big picture.

Palliative care in AN strikes me as the worst kind of "killing people with kindness." Strober's gestures are no doubt heartfelt, and he is likely doing what he thinks is best for his patients. He doesn't want to cause them pain and distress. No doubt most oncologists don't want to cause their cancer patients pain and distress, either. But that doesn't stop them from prescribing chemo*. Would it be kinder for an oncologist to say to a patient who is complaining about nausea and vomiting that all they have to do is stop their chemo and their agony will stop? For the short term. But for the long term? That is a life wasted.

If someone offered me palliative care or harm reduction, it would have almost entirely undermined my confidence in my own ability to recover. This confidence is necessary. So if no one else thinks I can get better, then why should I bother trying? As well, one of the most insidious aspects of anorexia is how the illness convinces you that you are worthless. And if treatment professionals are willing to write you off as hopeless or not worth the bother, then it only reinforces those views of yourself.

It's kind of depressing to think about, but I applaud Dr. Ravin for bringing up this difficult subject.

*Or radiation or surgery or whatever- all are unpleasant.
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