Images of Choice

Before I left the conference, and my visit with Cindy Sykes, she shared one more observation about Heather's care, which really encapsulated the challenge of prognostication, discerning who will do well and who not. This is a critical task for families as they try and make decisions about care. Having a better sense of possible outcomes is necessary to avoid the heartache of disappointment that comes with unfounded optimism or the lost opportunity for recovery that attends unsubstantiated pessimism. Early during Heather's course, Cindy recalled speaking with one of the doctors at the academic medical center where she was treated who described the predicament. In a confessional tone he shared a secret, most outsiders would not suspect: experts aren't very good at prognosticating, even when they make use of neuroimaging techniques. In fact, sometimes the scans can be very misleading. The doctor told Cindy, “We can look at two patients’ scans and one can look very bad and bleak like Heather's, and the other can look very promising, and the two have absolutely opposite outcomes. The one that looked good doesn't do well and the one that looked terrible does very well.”

Cindy's response to the predicament was both generous and illustrative of the challenges these families face. Generous in that she felt that both of “… those two patients should have the same opportunity to show their determination against the odds.” And illustrative of her experience, the challenge of making choices without being adequately informed about how things might turn out. Without the advantage of prognostic knowledge gleaned from science, one had to give the two patients both a chance. It was only fair because their futures were indistinguishable.

But Cindy's caution raised a deeper question of whether or not these families have been deprived of the right to informed consent and refusal. After all, how could they engage in informed decision making without the requisite amount of information they would need to make a choice? All the more so in the face of indeterminacy, that middle group referred to by Dr. Plum in the 1970s, when the outcome is unpredictable.