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Bad guessers and bad guesses. (editor's desk).

It's after the diagnosis. Physicians are most uncomfortable with it. They hardly offer it and at times waffle on it. It's not reimbursable and there's no code for it. Clinicians don't receive any training in it. It's usually preceded and succeeded by silence. No drug company has ever sponsored a lunch-time symposium on it.

But it's probably the one piece of information parents, spouses and patients cling to and refer to from that moment on. It has probably moved more people to action than declarations of war, memorable prose and unforgettable lyrics combined. It's the prognosis, and exceptional parents have heard every possible rendition, version and contortion of it.

Parents and patients might fear the diagnosis but it's the prognosis that serves as the mule kick to the head. The poet and novelist Sir Walter Scott remarked about the prognostication skills of physicians, "they are bad guessers." While it's true that specialists in oncology, critical care and traumatology probably have the most experience in prognostication, there are often large discrepancies in projected outcomes in identical cases.

Despite the contributions of biostatistics, medical informatics, disease staging studies and global pathological registries, the answer to the questions "how long," "how much," and "how bad" is guess-based, guess-driven and ultimately, guesstimated. The lingering question of "how come" is often also answered with a guess.

Nicholas A. Christakis, MD, PhD, a physician cross-trained in sociology, has examined the dynamics of physician prognostication. In his book Death Foretold, he notes that "there are three complementary ways in which physicians may understand and in the broadest sense, control a patient's disease: they can identify it, eliminate it, or predict its course. All three--diagnosis, therapy and prognosis--are means by which physicians come to terms, clinically and cognitively, with disease."

Exceptional parents, most notably the parents of children with abbreviated lifespan disorders (like the ones 1 rub shoulders with daily at Orange Grove), usually discard references to both their children's disease and therapy and relate to the time element. "Rick, I don't know how much longer Chad has, but for as long as he lives he will live with us," or "Rick, Robbie has already lived longer than anyone thought he would, we're now off the chart." "Rick, the pediatricians hardly ever look at me in the halls, not since they told me that Gwen wouldn't survive the night ... and that was twelve years ago."

Dr. Albert Lamb wrote in the Journal of Chronic Diseases, "Patients and their families will forgive you for wrong diagnoses, but will rarely forgive you for wrong prognoses." Most parents of children with special health care needs are more interested in hearing that their physicians and health care teams will partner with them, will be there "the whole time," that their interest, energy, and attention won't diminish with any prognosticated shadows.

Exceptional parents usually find themselves in the epicenter of prognostication. Their strategies, "Plan Bs" and energy stores pivot around answers to "how much longer," but not solely in the white-coat realm. "How much longer until the next level of insurance kicks in ... how much longer till we know if he's inclusion bound ... how much longer will we be on the waiting list?" The only thing that becomes predictable N the oh-too-familiar response, "it's hard to tell; we'll know better as time goes by." Try using that line the next time someone asks you, "how much longer till dinner's ready?"

For Exceptional Parents the prognosis is always something you didn't count on.
Rick Rader, MD
Director, Morton J. Kent Habilitation Center
Orange Grove Center, Chattanooga, TN
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Author:Rader, Rick
Publication:The Exceptional Parent
Date:Nov 1, 2002
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