My therapist told me I was running out of time. She had been recommending I sign myself into the hospital for several weeks. Each time, I said I was fine, that such drastic measures weren’t necessary, especially considering that I was acing all my college classes at my small liberal arts school in western Michigan. I didn’t think I needed to gain weight — in fact, I wasn’t even positive I had an eating disorder, despite weighing less than I had as a fourth-grader. I wrote off my falling-out hair and diminishing body temperature as mere coincidences to my steadily declining weight.
“If you don’t voluntarily sign yourself in, we might have to start thinking about forced commitment. You could die,” she said.
I tried not to laugh in her face. But as her words sunk in, I realized where any court would send me. I had heard stories about that psychiatric unit, and it frankly terrified me. I realized I would have far more control over my care if I signed myself in. So, two days after Christmas, at age 21, I did.
Looking back, it’s obvious the hospital stay saved my life, although it didn’t lead to immediate recovery or any overt psychological changes. I would bounce in and out of treatment facilities and hospitals for nearly a decade before any sort of recovery finally stuck.
In that I’m not unique. “One of the diagnostic criteria of anorexia includes a fear of weight gain or a failure to recognize the seriousness of the illness,” said Evelyn Attia, director of the Columbia & Weill Cornell Center for Eating Disorders. “By definition, treating anorexia comes with a lot of challenges.”
Those challenges were starkly evident in the recent New Jersey court case of a 29-year-old, 60-something-pound young woman known simply as A.G. The woman had been a ward of the state since 2014 after being found passed out in her hotel room and refusing treatment. Kept alive with a nasogastric feeding tube, A.G. wanted the right to refuse further forced feedings and subsist on black coffee, Diet Coke, and what little food she managed to absorb while binge eating and vomiting. She argued that future treatment would be futile, and that she wanted to die in peace. Her mother agreed, but the state of New Jersey took her to court to continue the tube feedings. In late November, a judge ruled that A.G. had made a “forthright, responsive, knowing, intelligent, voluntary, steadfast and credible” argument and said New Jersey couldn’t feed her against her will.
The case has set off a firestorm in the eating disorder community, with advocates, clinicians, and people with eating disorders divided. In a Huffington Post article, eating disorder advocate Laura Collins Lyster-Mensh argues that “there is no such thing as ‘late terminal anorexia nervosa,’” and that A.G. was not refusing to eat as much as she was unable to feed herself due to her eating disorder. On Twitter and Facebook, however, many eating disorder sufferers countered that low weight itself does not make someone incompetent in the eyes of the law and that A.G. should be allowed to direct her own care.
Answers in ethical cases like this are rarely straightforward, even for someone like me who knows the potential stakes all too well. I don’t know what I would want done if I were A.G., nor do I know enough about her case and her history to render any judgments on her behalf. What I do know is that without significant changes to the way we treat eating disorders, there will only be more A.G.s in court.
‘World’s deadliest game of hot potato’
Treating a disease that involves self-starvation seems relatively straightforward. “Just eat” seems to be the obvious solution. If only it were that simple. Just as someone with schizophrenia can’t will themselves out of psychosis and a person with bipolar disorder can’t wave a wand to eliminate mania, those with anorexia can’t just eat. Malnutrition accompanies eating disorders, which has been shown to shrink the brain and affect cognitive function, potentially interfering with a person’s ability to see the necessity of treatment. Many with anorexia also don’t find the weight loss alarming or disconcerting. As my illness tightened its grip and my weight dropped, I didn’t find the prospect of dying nearly as terrifying as the thought of having to face a plate of food five times a day. I wanted to get well, just as long as it didn’t involve eating or gaining weight.
Anorexia nervosa is not, by itself, a terminal illness. The vast majority of people with anorexia ultimately recover, or at least make vast improvements in their well-being and quality of life, even if some symptoms remain. (I consider myself in that last group.) Treatments — good treatments, effective treatments — exist, especially when people are diagnosed quickly and treated rapidly. Despite this, it remains the most lethal psychiatric disorder, with up to 20 percent of all people who have had anorexia for 20 years dying of the condition. Many die of the direct physical effects of long-term starvation. Without any external fuel, the body cannibalizes itself, eating fat and skeletal muscle before turning to vital organs. Hearts stop, livers and kidneys fail. Others die by suicide, worn down by years of struggle and an illness that seems to offer them no valid way out.
I came all too close to becoming one of those statistics. No matter how sick I got, however, insurance almost always denied care for “lack of medical necessity.” Other countries set absurdly low BMI thresholds for accessing even the most basic of care. What we hear is: You’re not sick enough. Psychiatric wards don’t want to handle eating disorder patients because they aren’t equipped to deal with the extensive medical complications that anorexia brings. Medical units don’t want to handle the difficult behaviors that also accompany an eating disorder. The result is the world’s deadliest game of hot potato, where many anorexia patients are bounced around from place to place, being kept alive but not actually treated. It’s not surprising, then, that many with long-term eating disorders begin to lose hope in the possibility of recovery.
I was lucky — I cobbled together the support I needed as an outpatient that ultimately helped me turn the corner. Relearning how to eat and returning to a normal weight was agonizing, and I often became combative as primal fear morphed into anger. While maintaining a small set of non-negotiables, my treatment team worked with me to instill a sense of hope that improvement was possible and to help me get there, bite by bite.
The author in 2016 at Suomenlinna, Finland. Courtesy Carrie Arnold
What treatment means
When treatment fails, clinicians often blame patients for being “difficult” or “treatment-resistant.” But in those cases the problem, according to Stephen Touyz, a psychologist at the University of Sydney in Australia, isn’t the patient but rather a lack of effective approaches.
If this were cancer with a list of established therapies, making the decision that treatment options had run out would be relatively straightforward. With eating disorders, it’s much less so. Experts remain divided on what the key outcome of treatment should be, and how much distress a patient should go through to achieve it. Compounding the troubles, the type of long-term, community-based support that adults with anorexia often need simply doesn’t exist. Residential treatment can cost upward of $40,000 per month, and insurance generally doesn’t cover it.
Treating a disease that involves self-starvation seems relatively straightforward. “Just eat” seems to be the obvious solution. If only it were that simple.
A new approach to treating the most severe form of the disease — severe and enduring anorexia nervosa, for which no treatment currently works — calls for moving the goalposts. Instead of requiring these individuals to gain weight, a select few clinicians instead emphasize improving quality of life. A study of this approach found that, although these patients may not recover, their depression decreased and they were able to make important strides in other areas of their life, such as returning to school or starting a family.
“If you don’t help a person help themselves, all the decisions end up in the hands of the disorder,” said Touyz.
But that way of thinking about the disorder remains highly controversial. Angela Guarda, director of the eating disorders program at Johns Hopkins University, disagrees with this approach, as well as the ruling in A.G.’s court case.
“Severe anorexia impairs judgment specifically in the area of decision making about what is the right treatment. Those of us who have treated 1,000 plus patients know that we are bad at predicting who will recover and have seen recovery in some of the most severely ill and chronic cases, even in cases who failed multiple treatments,” Guarda said in an email. “There is much danger in viewing anorexia as a terminal illness. Instilling hope and helping patients find a path to recovery should always be our goal.”
Guarda’s own work showed that weight gain was often a necessary precursor to emotional recovery. Once admitted to a hospital and partially re-fed, many patients who felt strong-armed into treatment realized their loved ones had done the right thing.
Not all that long ago, I would have come down strongly on the side for using forced feeding, but now I’m not so sure. I think that force feeding is and will continue to be a lifesaving tool for many with eating disorders, but when it’s used alone on a long-term patient in a non-specialist eating disorders unit, I have begun to question its usefulness.
A court order for forced feeding will never last long enough for that person to achieve wellness, and it’s almost certain he or she would return to the eating disorder the second the order was lifted. What’s more, it’s unlikely individuals would regain trust in a medical system that pitted itself against them, leaving them to live out their illness alone, without any support. For these types of patients, it could very well be more humane to help them engage with treatment on whatever level possible and improve what life they have left, even if it’s significantly shorter than anyone would like it to be.
Whether or not A.G. survives, her case is a tragedy on all fronts. Until we have a system that offers those with eating disorders the range of care options with which they and their loved ones can engage, A.G.s will continue appear in front of judges in seemingly no-win situations.
