Well, that depends

Should a parent listen to the advice of treatment professionals?

Usually, the responsible answer is "yes." The responsible thing for me to say to any parent seeking help is: "get expert advice." But let's be straight here: it all depends on how close the professional is to being right and they are all over the map. If the person you are consulting knows what they are talking about and is using the best information available and applying it appropriately to your particular situation then listening to the professional is the right thing to do. But if they are not, and many aren't, it is irresponsible to follow that treatment advice. How do we know the difference? We are laypeople: inexperienced, shocked to be in the situation at all, and generally clueless when we begin. And scared.

I've observed that at least half - probably more - of the professional advice about eating disorders that a family will find is dead wrong. I mean that literally, as these are life and death matters. Most families will be offered incorrect, inadequate, conflicting, distracting, and out of context advice along the way. They will rarely hear the same advice twice as they go from doctor to therapist to dietician to coach to guidance counselor to social worker - most won't know much, some will know a lot but it will be outdated, and there are even those who are leaders in the field still very tied to ideas that are demonstrably wrong. I find the chances of better advice and support increase with certain factors:
Chances decrease when:
  • Local providers apply their skills in other areas of health/psychology/nutrition to eating disorders without getting specialized training and experience.
  • A self-appointed expert develops a reputation for a socially attractive idea around EDs - usually by writing a book
  • Patient's family has no money for healthcare
  • Patient's family has A LOT of money
  • Patient's healthcare system only offers care in extreme situations or in one-size fits all
  • Parents with a great trusting relationship with local doctors and therapists with no ED training
  • Bad luck

Comments

  1. Living about an hour from Grand Rapids, a large city, in Michigan I can share there is not one provider who is knowledgeable about current research concerning EDs and practicing evidence-based treatment. There are many, many who treat eating disorders and even a specialized clinic, but they continue to operate on outdated theories that are truly harmful and not effective; we know this personally. There is one FBT about an hour away in Kalamazoo. Otherwise, we need to drive over three hours to the Detroit area or Chicago which is difficult to do on a consistent basis. Unfortunately, FBT is a needle in a haystack for most Americans. If pediatricians were properly trained, they could at least point parents in the right direction . . . if only.

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  2. If annoying, googling parents who insist on questioning their providers and looking things up themselves, especially those with an "insatiable desire for prediction and control with related intolerance for uncertainty" actually improved services then we'd have the best in the world - but I see that you mean such parents who are then able to use their knowledge to choose providers. Some of us can only use it to bash our existing ones over the head with - but there's a certain satisfaction in that!

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  3. Absolutely, these "more likely" and "less likely" factors are dependent on availability and being in a system with choice.

    I wish there was a better formula, and I wish there was more availability and more choice!

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  4. I agree with you Laura. I also think that if parents had a child with a cancer that had a 10% mortality, they would certainly drive to another state to receive good care at a University or a Children's hospital. And random professionals wouldn't just take a stab at caring for this patient, they would refer to the experts. But with ed, sadly, anyone can be an expert.

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  5. Many professionals who treat eating disorders do not like change. They feel comfortable in their established patterns of thinking and behavior and find it difficult to adapt to new ways of approaching the illness. This plays a role in the difficulty they experience in providing Family Based Treatment. FBT is both new to them and it involves placing someone else -- parents -- in control, which is difficult for those providers who have an "insatiable desire for control."

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