Palliative Care for Anorexia Nervosa?

I recently read an article in the International Journal of Eating Disorders entitled Managing the Chronic, Treatment-Resistant Patient with Anorexia Nervosa (Strober, 2004). Though eloquently written and artfully persuasive, this was probably the most depressing journal article I have ever read. The author, Michael Strober, seeks to help readers “resolve the paradox of caring for patients who seem so decidedly opposed to change.” Essentially, Strober advises psychologists to avoid pushing, or even encouraging, full nutrition and weight restoration in chronically ill patients with AN because these attempts will backfire by upsetting the patient emotionally and thus leading to premature termination of therapy. Instead, he argues, therapists “can expect little, should seek nothing, and must largely defer to the patient in regards to the objective of the time shared together.”

Strober states that the therapist’s attempts to encourage re-feeding “will feel like an assault” to the patient and are “certain to induce peril.” He warns therapists that their efforts to coerce patients into hospitalization or other much-needed medical care will result in “a potentially dangerous exacerbation of symptoms.” The article presents two tragic case studies of women in their late 20’s who have been chronically ill with AN since early adolescence. Each story is presented as a cautionary tale describing the deleterious effects of requiring full nutrition and weight restoration in these types of patients. Finally, Strober admonishes therapists to be aware of their counter-transference with such patients and advises them to “concede the reality that there may be little to do to drastically alter the course of a patient’s illness,” and notes that “this is neither failure nor inferiority.”

I view this entire philosophy 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.

Strober argues that there is a place in our field for palliative care for treatment-resistant anorexics. I disagree. Anorexia nervosa is, by definition, resistant to treatment. The “peril” that ensues during re-feeding is real and universal. Re-feeding is agonizing for the patient herself, her friends and family, and her treatment team. Anyone who has ever made the heroic journey from AN to recovery will tell you that. I have never met an anorexic who gladly relinquished rigid control over her diet, voluntarily prepared and consumed high-calorie meals, and excitedly welcomed weight restoration without struggle. A person such as this would not have been diagnosed with AN in the first place. Chronically ill patients with AN are not resistant to treatment. Treatment is resistant to them.

Towards the end of the article, Strober warns therapists to keep their counter-transference in check by not pushing patients too hard, not expecting recovery, and resigning themselves to the reality that these patients are destined for a lifetime of illness and misery followed by a premature death. He notes that many therapists are not well-suited for providing palliative care to treatment-resistant anorexics. I, for one, am certainly not cut out for that type of work. I am not able to sit impassively with a patient who has been ill for fifteen years without taking draconian measures to propel her towards health. I recognize that responsibility for her recovery, at least initially, lies with me and with her family. I would not expect a patient with that level of illness to embrace recovery. That’s my job, not hers.

Individuals with AN are almost universally brilliant, talented, sensitive, and intense. They have so much potential, so many gifts to offer the world. They are physicians and nurses and lawyers, scientists and professors and teachers. They are outstanding athletes, writers, singers, dancers, actresses, and artists. Consider three-time Grammy-winning singer Karen Carpenter who died of AN at age 33 and world-class gymnast Christy Henrich, who died of AN at age 22. These women were beloved daughters, loyal sisters, caring friends.

It baffles me that, in a society which purports to value human life, we allow these precious lives slip away. The Bush administration placed restrictions on stem-cell research, supposedly out of concern for the sanctity of life. Nearly half of Americans are opposed to abortion. Our society believes that elderly, terminally ill patients in excruciating pain must not be allowed to die, as evidenced by the fact that doctor-assisted suicide is illegal in every state except Oregon. States have laws which allow for the involuntary hospitalization of imminently suicidal and floridly psychotic patients, recognizing that these individuals are not well enough to care for themselves. Psychiatric hospitals use 4-point restraints, sedatives, and padded rooms to prevent patients from injuring themselves. Prisoners are forbidden from having sharp objects and belts in order to protect them from taking their own lives. Death row inmates who attempt suicide are resuscitated. Don’t we owe the same to innocent people who are suffering from a horrible eating disorder?

5 Replies to “Palliative Care for Anorexia Nervosa?”

  1. I totally agree with you – to give up and describe someone as treatment resistant is not only unethical but also to fail to understand people do recover when they are ready. Thank you for alerting me to this article – I am very concerned with this type of attitude. And it is only by bringing it out into the open we can stop such behaviour on the behalf of professionals. thank you.
    Fiona Place
    Author of Cardboard; a woman left for dead

  2. I guess I can understand why with adults who have the choice of leaving treatment at any time, it might be worthwhile to start with a smaller goal- increasing cals to 1500/day, gaining some weight even if not to full weight restoration, etc. in order to not have the patient leave treament without any progress. But how can you in good conscience give a patient with a BMI of 12.2 “assurance that weight gain will not be a principal objective of the management approach”?

    I find the scenario of patient “S” rather strange. If the patient wanted to continue in treatment but was having some resistance to gaining further weight after the first 20 lbs, I don’t see her treatment team abandoning her in the way described.

  3. Is it really so hard to understand that something so nearly universal as resistence to treatment and an irrational but crippling fear of food and weight gain are SYMPTOMS of this illness?

    The notion of uncomfortable and distressing treatment in service to the return of wellness is not new to medicine, nor to interpersonal therapy, for that matter.

    Are we going to have to wait until all the doctors and therapists who don’t keep up with the research and the science die off themselves before every sufferer gets a real chance at recovering?

    Thank you Dr. Ravin. I really appreciate the work you do.

  4. Palliative care is an active approach to managing the whole patient and family and their problems which applies to many conditions. The potential numbers of people with these conditions far exceed those of people with cancer. Thanks for the post.

Comments are closed.