Ethics in Medical Decision-Making

Abstract

Abstract In recent decades, medical decision-making with persons with serious illness has focused on patient-directed treatment. Through informed consent, patients with decision-making capacity choose treatments according to their goals and values. When patients lack decision-making capacity, appointed surrogates or close family members make decision for them, sometimes consulting their written wishes, other times considering their wishes and values. More complex scenarios challenge normative ethical guidance. This chapter explores the stories of patients on a spectrum of decision-making capacity—including those who have a limited understanding of complex medical options but can express a preference or make a choice from among limited options. It presents the perspectives of surrogates and families who encounter barriers in respecting the wishes of patients. Through narrative, we examine situations which challenge clinicians to identify and communicate about limitations, working for resolutions which respect and mediate interests which are often held in tension.