Stories of the Silent: Advocating for a Disabled Woman at End of Life

Abstract

Carol’s story is one of a disabled woman who, after living in her home for 10 years with the assistance of paid providers, is hospitalized in an acute care facility for surgery. Postoperative delirium and confusion cause Carol to lose decision-making capacity for a short time; even when her mental clarity returns, Carol is subject to disability bias, possibly unconscious, by health care providers who are persuaded to listen to her psychiatrically impaired son. The case study demonstrates that patients with disabilities in the acute care hospital environment need health care providers and ethics consultants who are open to learning their story and incorporate their wishes into a plan of care that supports their dignity.