Palliative care for EDs?

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.

posted under , , |


Tianne said...

i've been offered palliative care... it was shocking... i said no...

Katy said...

I am having trouble finishing the Strober article because it's noxious in SO many ways, but Dr. Ravin's response is so fabulous I feel I have to slog through this godawful article just so I can fully appreciate her...

But WOW, I don't think I've ever read an article that had me quite so steamed with every word...

Carrie Arnold said...


I am so glad you said no! Good for you. Ed felt that kick in the nads...


My word verification was "dicalm" which was pretty much the opposite of what I was feeling when I read the article as well.

Carrie Arnold said...
This comment has been removed by the author.
Susie said...

i must admit i have never heard of this before.

It just seems ludicrous! What next? the same for depression? I've been on almost as many anti-depressants as i have years been depressed (fortunately this one seems to be working if i can live with the side effects) so for all those who've not found the right meds or have had enough of their psychiatric illness, to we allow them a DNR (do not rescusitate) too?

and i thought palliative care was about making people comfortable until the inevitable happens, well that doesn't make sense with anorexia! Is not the initial and most painful battle in the mind? how are you supposed to take that pain away? if you take that pain away the surely you are working on recovery!

I'd love to know what my nurse & GP think of this. I don't think they'd go along with it somehow. Carrie, i tried the link for the original article but couldn't get it. any ideas?

The_Timekeeper said...

I felt deep grief for a long time when I learned my primary-care physician and psychiatrist considered me a palliative-care patient ... I read it in my records, then my psychiatrist confirmed it. He tried to assuage my upset by saying I misunderstood what the term means to medical professionals ... that it means only they are treating a patient for an illness for which there is no cure, and anorexia technically has no cure.

That may be how he chose to present it to me, but the way the team treated me, the advice they gave, the comments ... it was my sense they were looking at palliative care in a most traditional sense and not some technical umbrella.

They discouraged pro-active care; discouraged inpatient or specialized care (but said they would support whatever I wanted to do); they avoided ED referrals and instead pointed me to home health, nursing homes, and, at one point, hospice.

I ignored them and sought help, anyway. I have been in and out of the hospital many times since then, and the psychiatrist now says I am "getting better in dog-years...," but that I *am* getting better. He no longer notes me as a palliative-care patient, but I believe he still sees me that way. He says I have an insurmountable co-morbidity of biology and family history, AN, anxiety, PTSD, early-onset and chronicity.

The hospital team that treats me say he's doing me a disservice, and I now agree with them. At one point, it was easier to be working with someone who had no expectations of me and who didn't push weight gain or accountability for anything. But I have spent the past 8 years wanting to prove the palliative-care team wrong ... to survive, thrive, recover. I haven't recovered, but I won't give up ... and I don't think physicians should adopt harm-reduction or palliative care a anorexia, especially since what science understands about it is really still emerging. I think the profession will be ashamed at such suggestions looking back ... and it's a shame some of us have been on the patient end of this philosophy.

Post a Comment

Newer Post Older Post Home

ED Bites on Facebook!

ED Bites is on Twitter!

Search ED Bites

About Me

My photo
I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

Drop me a line!

Have any questions or comments about this blog? Feel free to email me at

nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


Popular Posts


Recent Comments