Shared Decision Making, Truth Telling, and the Recalcitrant Family

Discussions between pediatricians and parents about withholding or withdrawing life-sustaining treatment are emotionally difficult. There is uncertainty on both sides. Doctors are often making a probabilistic assessment of the chances that the child will survive. Parents must decide whether to trust the doctors and whether to trust their own conflicting feelings. In such circumstances, straightforward conversations are difficult. Instead, doctors and parents both may try to avoid discussions about prognosis or, if they have them, elide difficult truths. Literature and poetry offer insights into the ways that such discussions may take place and about the ways that important truths can be approached obliquely, rather than straightforwardly. Examples from the poetry of Emily Dickinson, the fiction of Fyodor Dostoevsky and Kenzaburo Oe, and a memoir by Alan Shapiro illustrate the treacherous ground upon which such discussions inevitably take place and the all-too-human ways in which difficult truths are broached.