Imagine a deadly, but treatable, illness where "experts" refused to use their own science. Imagine if many oncologists, for example, simply didn't offer the medicines and interventions of their field. If dentists continued to use the tools used in the 1950s because that is the way they were trained?
Now picture yourself as the parent of a child diagnosed with an illness that kills at least one in ten of its victims and only one in three of the survivors go on to lives without disabling symptoms. You seek care only to find that there are no agreed upon rules, no protocols, no standards of care.
You discover that despite real and optimistic advances in the science of the field that most of the clinicians offering treatment do not offer these alternatives, or know about them. You learn that there is no accountability for those who use untested and purely speculative methods, and that the job of knowing what treatments exist is up to you -- a layperson. You may have to fight professionals and insurance and your health system for the right to use evidence-based care.
Welcome to eating disorder treatment in 2010.
My fellow blogger, Sheila Himmel, says it best:
"Five studies. That's the complete scientific literature about the effectiveness of different treatments for eating disorders for children and adolescents. The largest of these studies had 165 participants. "
The public doesn't know this. Parents don't know this and we need to: Eating disorders nearly always begin in puberty and adolescence when we are the ones likely to be guiding care. We enter the eating disorders world assuming there are validated treatments -- as there are for drugs and medical devices. After all, how could a clinician take on the care of our precious child without clear evidence that what they are doing really works?
We do need to develop more effective treatments but it is just as important is to stop using ideas that don't work. Not only is ineffective treatment painful for all involved the chance of recovery goes down over time, not up, and quickly. It is urgent that patients receive the most useful treatment at the earliest diagnosis and contingency plans be in place. Lives are lost because of ineffective treatment and it is time to stop blaming the patients and their families and the illness for this.
It is time to stop saying that all paths are equal, that it takes time, that patients have to find their own way, and that there are no wrong answers. There ARE wrong answers, and it is time for more people to say so.
Why are we in this situation? Probably because this is a new and multi-disciplinary field with a great deal of goodwill but a lack of science training. It is, without question, a really tough illness to witness and treat. Successful treatment requires training and experience in medical, psychiatric, and psychological factors beyond the training or experience of all but a few, but this doesn't stop people without that background from trying. The fact that many treatment providers are recovered patients can lead to uncritical professional courtesy between colleagues, and strong identification with patients. There are a lot of reasons we are where we are, but no excuses.
Everyone in the eating disorder world knows the dismal statistics for eating disorder survival with "treatment as usual." They should be unacceptable. We all care about the ravages of a life spent in the purgatory of restriction and binging and purging not just because of the medical effects but the emotional and cognitive anguish of being trapped in an anorexic, bulimic, or binge eating mind. The medical symptoms are nothing compared to the mental ones.
What I don't understand is why our society and the field is so tolerant of the current state of eating disorder treatment. After all, about five percent of the population experiences an eating disorder at some point. Most people know someone with an eating disorder, and many of us have wept with those who have lost family members to permanent disability, alienation, or death.
I don't believe any of those outcomes were necessary and I believe it is our fault -- all of us -- for allowing this situation to go on. We need to stop leaving patients to their illness as if they deserve their distress. We need to start treating families coping with this diagnosis as we would a friend with cancer: with support and casseroles and information. We need to stop nodding at pet theories and refuse to let eating disorder causation be a parlor game.
We need to question the dozens of specious treatments that are so blithely offered to the public, and demand research funding for eating disorders as we do other illnesses. Eating disorders affect five times as many people but in the U.S. receive less than $2 per $100 spent on schizophrenia, for example. This is because people aren't standing up, not because it affects fewer people or causes less damage to society.
We need to ask why even where good research exists it isn't being used. Is there any reason why the approach recommended by the American Psychiatric Association as the first line of treatment for anorexia, for example, is rarely offered to families despite decades of its successful use in the field? Why would most clinicians out there treating children still be unfamiliar with and untrained in the Family-Based Maudsley approach?
We have enough information about what works, and lack of evidence for what is commonly offered, right now, if we use it. We need more, but it has to start from the best evidence and not from antiquated and harmful approaches with no evidence. It is time for us all to get mad and ask how many lives would be saved if we insisted, starting today, on evidence-based treatment for eating disorders.
Follow Laura Collins Lyster-Mensh on Twitter: www.twitter.com/LauraCollinsLM