Article

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.
CI - Copyright (c) 2013 American Congress of Rehabilitation Medicine. Published by
Elsevier Inc. All rights reserved.

Langue : ANGLAIS