My heart breaks for the patient, the family, and all those supporting "A.G.,” a woman with anorexia at the center of a legal controversy in New Jersey.
I do not know the family, but I do know about anorexia nervosa. And there is no such thing as "late terminal anorexia-nervosa."
Eating disorders are often disabling and too often fatal, but the disease doesn't kill people: lack of proper treatment does. People with anorexia do not choose the thoughts and the beliefs and the behaviors that we see from the outside. What appears to be a "desire" to avoid eating and a "wish" to end treatment and "refusal" to eat are symptoms of a severe brain disorder.
A disorder that is treatable. A disorder from which people can fully recover. At all ages and from even the most dire health.
It is not uncommon for those with eating disorders to believe they would be better off dead. There are many parents who have heard this, and many former patients can attest to it. Suicidal thoughts are a known symptom of eating disorders. And, tragically, a significant portion of those who die of eating disorders do so from suicide.
Leaving active treatment is a suicidal act for many. When the ability to nourish oneself is lost, leaving treatment can be a death sentence.
At issue in this case, as in most cases of anorexia, is "force feeding." Let's examine that. When someone is drowning, do we call it "force breathing" to pull them to safety and resuscitate them? Is it, when a suicidal person stands on a ledge, forced not-falling when we prevent them from jumping? Of course not. It is only called "forced" when you believe the person has a choice.
Sufferers of mental illness are not always in a rational state of mind. Their decisions can be clouded by irrational thought patterns, and their extreme distress may render them unable to make choices. We know to rescue those who are unable to breathe, or are suicidal. For some reason we fail to see that, too often, in those with eating disorders.
Treatment for anorexia nervosa requires eating. Not just eating enough to get out of a hospital bed or enough not to "look" anorexic. Successful treatment requires regaining normal brain function, and that only happens when someone is nourished well enough, for long enough, in a safe and supportive environment. Successful treatment really starts when the brain is re-nourished.
There is no "late terminal anorexia nervosa" as A.G.’s case was described in court. But there is, in our society, late terminal failure to protect those with mental illness. We fail to intervene early, we fail to follow through all the way to recovery, we fail to support relapse prevention. We fail to see that short periods of re-feeding are like under-dosing antibiotics and wondering why it isn't "working." We fail to see the symptoms of mental illness for what they are, mistaking them for the person's true thoughts and motivations.
Parents around the world are watching what happens in these cases. They watch in dread and horror to see that society, and some clinicians, and the legal system, don't understand and will not help. They see their own loved ones may also be be let down by patchwork treatment and a legal system that listens to a patient's words and not their real needs.
Anorexia nervosa is treatable. Our failed treatment environment may not be. We can -- we must do better.
Laura Collins Lyster-Mensh is a consultant at Circum Mensam LLC, where she helps treatment providers work collaboratively with families: for better outcomes and resilient families. She can be reached at LM@circummensam.com, where the NEW PLATES podcast is available free.