HOW TRADITIONAL DEFINITIONS OF AUTONOMY IMPAIR DECISION-MAKING IN SPINAL MUSCULAR ATROPHY AND ALZHEIMER DISEASE

Abstract

Clinical decision making is influenced by available literature, technology, and guidelines, but also by cultural expectations, physician experience, and personal biases. The treatment of various forms of disability is especially vulnerable to these prejudices. Alzheimer Dementia (AD) and Spinal Muscular Atrophy (SMA) represent forms of cognitive and physical disability, respectively. In severe forms of both diseases, patients are often unable to communicate and do not meet traditional definitions of autonomy. However, physicians and consensus guidelines adhere to these very same definitions of autonomy, which subsequently disadvantages patients that cannot verbalize. This bias is reflected in available guidelines for catheter-directed thrombectomy for acute ischemic strokes, which passively discourage physicians from treating patients with baseline AD. Inversely, pediatric definitions of autonomy may expose patients to over-treatment with nusinersen, a medication recently approved for the treatment of SMA. Adapting theories of bodily autonomy will allow physicians to approach the treatment of those who cannot verbalize in a more ethical fashion.