Assessing Capacity and Exploring Goals of Care in Locked-In Syndrome

Patients with locked-in syndrome (LIS) pose unique ethical challenges for decision making, given the complexities of communication. However, some of these patients may retain the ability to participate in decisions regarding their care, including whether to continue life-sustaining treatment or pursue comfort care only. Following a deidentified case, this article has 2 central aims. First, it examines the ethical foundations of decision making and the complexities of capacity assessments for this patient population. Second, it offers a practical guide for neurologists to use when making such evaluations. This guide facilitates a way of communicating with patients with LIS so that clinicians may more systematically assess the patient's capacity to make their own consequential medical decisions.