Dana Howard and David Wendler, "Beyond Instrumental Value: Respecting The Will of Others and Deciding On Their Behalf" The Oxford Handbook of Philosophy and Disability Edited by Adam Cureton and David T. Wasserman [Oxford University Press 2020]
This chapter explores the ethical responsibilities of those who make medical decisions on behalf of individuals with intellectual and/or developmental disabilities that result in lifelong decisional incapacity. Standard accounts argue that because these patients have never had the capacity to make their own decisions, surrogates should make decisions based solely on what best promotes the patients’ welfare. On such accounts, the preferences, values, and decisions of those with impaired consent capacity are still relevant to decision making but only instrumentally: to the extent that soliciting them is conducive to or can provide an indicator of the patients’ general interests. Such accounts fail to ensure that such patients are properly respected. Rather than emphasize the importance of respect for autonomy, this chapter explores the more inclusive question of how decision making can be done in a way that does not insult the existent agential capacities of individuals. Trustees need to recognize that a patient’s unique evaluative perspective possesses intrinsic normative significance, and giving moral weight to their preferences, values, and decisions provides a way to respect that perspective.