Hope, Damned Hope, and Statistics
So I’m watching this trailer for this documentary called “39 Pounds of Love,”, about a 42 year-old man with Spinal Muscular Atrophy Type 2 , whose doctor had predicted he would die by age 6. He’s now an animator, weighs 39 pounds, and goes in search of this doctor. From the trailer, I get the sense that he’s out to tell off the doctor for giving him such a grim prognosis. I don’t know if it’s how the story goes, but if it is, it surely isn’t fair.
As doctors, we’re in a predicament: taking away someone’s hope is, in my opinion, a mistake that I hope I never make, but probably will. At the same time, false hope is maybe worse. I try to remain cautiously optimistic, especially when things take a turn for the better. In fact, initial studies suggest that doctors are way too optimistic: one study found that doctors over-predicted prognosis by 5 times–so that in terminally-ill patients given, say, 10 months to live, they only lived about two.
This kind of makes sense–sunny-side up people are probably going to be more attracted to medicine than half-empty folks. Doctors like to imagine believe that we can truly fix every patient–or at least help them.
So especially in a condition as rare as Spinal Muscular Atrophy (4 cases per 100,000), especially back in the 1960s (there are 190 papers on it in Pubmed from 1900-1960, and only 40 in English), I don’t think the doctor was a bad doctor, or intentionally hopeless. If anything, if we believe the studies on prognostication, he was probably a little too optimistic.
Hi Graham. :) I agree with you about the “false hope” bit. I certainly do not know the “correct” answer to the conundrum you present here, but maybe people may be satisfied with the truth…
… and the knowledge that you, as their doc, will do what you can to improve both the quality and quantity of life the best you know how.
Maybe they just want to be able to put their hope in you.