Disability versus futility in rationing health care services: defining medical futility based on permanent unconsciousness--PVS, coma, and anencephaly

Abstract

All societies must ration health care services in the face of unlimited demand. The concept of medical futility may appear to be an uncontroversial means by which to ration services. Depending upon how it is applied, however, limiting services based on alleged medical futility may violate prohibitions against disability-based discrimination. In particular, use of medical futility to require removal of life-sustaining interventions has been held to violate the Americans with Disabilities Act. The ADA protects both people with disabilities who are conscious and people in unconscious states, such as permanent vegetative state (PVS), coma, and anencephaly. Ultimately, as the number of people in permanently unconscious states increases, our society will have to recognize that consciousness is an essential characteristic defining human beings and determining whether a legal right to unlimited life-sustaining intervention should apply. This article proposes to define medical futility to preclude life-sustaining interventions after a stated period of permanent unconsciousness and to redefine the end of life consistently as neocortical death.