Disorders of Consciousness and Disordered Care: Families, Caregivers, and Narratives of Necessity

By their nature, care decisions for patients with severe disorders of consciousness must involve surrogates. Patients, so impaired, have lost their decision-making capacity and the ability to direct their own care. Surrogates—family members, friends, or other intimates—must step in and make decisions about ongoing care or its withdrawal. This article shares the narrative experiences of these surrogate decision makers as they encounter the American health care system and accompany patients from injury through rehabilitation. Through their perspectives, the article considers challenges to ongoing care and rehabilitation that are a function of a prevailing medical infrastructure and reimbursement framework better suited to patients with acute care needs. Specific attention is paid to the ethical challenges posed by reimbursement strategies such as “medical necessity” as well as those proposed for the Affordable Care Act. The argument concludes that when it comes to care for a disorder related to consciousness, its provision is not discretionary, and its receipt is not an entitlement but a civil right.