The paper that Isra presents stems from collaborative work with Lisa Forsberg (Oxford) and Anthony Skelton (Western).
In several English cases in which adolescents have sought to refuse life-prolonging treatment (LPT) (Re E, Re S, Re L), the court refers to a lack of knowledge about what it is like to die as grounds for finding decision-making incapacity. By contrast, the court has found no adult incompetent to refuse LPT on phenomenal grounds. Indeed, such a requirement was deprecated in Re MB and Re W.
L. A. Paul’s work on transformative experience provides analytical guidance with respect to these cases. Paul argues that decisions over choices whose options include radically new experience, and whose selection may change an individual’s personal preferences, cannot be taken rationally in the sense normative decision theory requires. This is because individuals lack access to information about the relevant phenomena and their own future preferences necessary to assign values to the outcomes of transformative options—a requirement of decision theory.
We argue the decision to refuse LPT involves transformative choice. Most do not know what it is like to die, or how dying might alter their preferences. This matters because the tests for decision-making capacity are decision-theoretic in nature. If one cannot assign values to transformative choices, it seems that few, whether adults or adolescents, possess legal capacity to refuse LPT.
This presents a problem for those wishing to treat adolescents and adults differently in respect of refusing LPT on this ground. We argue that consistency requires either that both are treated according to the standard that currently governs adults or that both are governed by some higher standard such as the one governing adolescents. If lack of knowledge is insufficient to differentiate adolescents and adults in respect of the capacity to refuse LPT, treating adolescent refusals differently must be done on some other (principled) grounds.