The Title That Made Me Cry

A few years ago, two friends of mine, both eating disorder clinicians, gave a presentation at a professional eating disorder conference in the U.S. titled “Who Dies.” When they first shared the title with me, I had very mixed emotions. On one hand, I was incredibly thankful that they were addressing such a critically relevant and significant topic as investigating who dies from eating disorders and who doesn’t, in an effort to improve the survival rate of eating disorder patients. But on the other hand, I had a lot of difficulty handling the title. It was so blunt that it seemed almost tactless. At first it made me physically cringe, and then it made me cry.

As the parent of a daughter with an eating disorder, I am well aware that eating disorders carry the highest mortality rate of any psychiatric illness. No one tries to hide that awful fact. It’s just that I am used to professionals using clinical terms, like “mortality rate”, which gives the illusion of distance from the word “death”. For my own sanity, I need that distance. “Who Dies” was so incredibly visceral, so electrically emotional, so shockingly exposed, so painfully raw, that I felt it cut right through my heart, sharper than any knife possibly could.

I think it’s safe to say that death is the ultimate failure in eating disorder treatment. As much as eating disorders ravage the human body, they also ravage the human mind, and can lead to suicide. The anxiety, depression, and other psychiatric conditions which often accompany eating disorders are as damaging as the physical effects, if not more so.

“Failure” is a horrible concept, especially when the end result is the loss of human life, and especially when those precious lives are often so young. Sometimes, failure is an outcome that is not necessarily reflective of the process; however, that doesn’t absolve us from constantly re-evaluating the process and searching for alternative processes that may reduce the possibility of future failure. I know that the most capable and competent of clinicians have lost patients to eating disorders, just as I know that the most loving and caring of parents have lost children to eating disorders. It’s the elusive nature of the eating disorder beast that makes this illness so hard to treat for so many.

The stubbornly high mortality rate of eating disorder patients may also represent a problem to some degree in eating disorder research. As a mother, I feel intense chagrin when I read about research that is so incredibly distanced from patient care, with little practical application, and with minimal impact on solving the enigma of why it’s so difficult to treat eating disorders, which tragically leads to the ultimate failure in treatment.

My daughter has been in multiple treatment settings here in Israel, so it’s safe to say that I have been around the block more than a few times.  I can’t say what will lower the number of people who die from eating disorders, but I can point out two issues. Firstly, we need actionable early diagnostic and early intervention systems. Sadly, we don’t have any of these systems in place here in Israel. An eating disorder can be staring a doctor, an athletic coach, or a school guidance counselor in the face, and they are not seeing it, because they haven’t been trained to identify eating disorders. As a result, they are not making the necessary referrals to get immediate help for those whose lives may depend on early diagnosis and treatment. By the time some patients are diagnosed, the eating disorder is so deeply entrenched that the chance of recovery has quite possibly been severely compromised.

Another significant problem, in my opinion obviously, is that Israeli clinicians are not fond of the concept of “evidence-based treatment”, meaning treatment that is based on (current) scientific evidence. The methods that are used with the highest level of efficacy to treat eating disorders in the US, Australia, and the UK are not readily found or used here in Israel. There are no enforceable medical care standards to dictate which types of treatment should be used in inpatient or outpatient settings. There is no significant push to re-train clinicians in more successful treatment methods than the psychotherapy that was considered current decades ago.  I can’t say with any degree of certainty that this detriment is causing more eating disorder related deaths, but it sure as hell isn’t helping the cause.

If eating disorders aren’t being diagnosed early enough, and if they are not being treated using modalities with proven efficacy, I just don’t see how we are going to get that frightening eating disorder mortality rate down anytime soon. And just to be clear, we have good clinicians here in Israel. We have systems in place to deliver treatment. There are people in the Ministry of Health who care deeply about the well-being of eating disorder patients. But somehow, none of that is translating into better diagnostic training and more successful eating disorder treatment.

And so, even though it’s a devastatingly difficult question that makes me cry, we must keep asking “who dies”, in the hopes that someday, the answer will be “no one.”