Expected and observed behavior of nurses and terminal patients

Abstract

This study examines perceptions of how nurse and patient roles should be structured to deal with terminal illness and the degree of congruence between the expectations of professionals and patients. Further, nurse and patient perceptions of their actual role behavior are compared. The sick role has traditionally been conceptualized as a process of health, illness, and a return to health with little attention given to the prospect of non-recovery. In the sick role perspective, the normative value of independence and self-reliance is temporarily abated during illness and its subsequent dependency. As described by Parsons (1951), the sick role incorporates general patient norms of cooperation and submission to medical objectives and to hospital regimen, with the implication that patients will conform to requests of hospital personnel and the requirements of institutional living with little protest. Similarly, physicians and nurses are assumed to endorse patient norms of acceptance and compliance with even painful treatment modalities, with minimal complaint by patients. However, since the advent of civil rights legislation in the U.S.A., the feminist movement, and greater consumer consciousness, unquestioning adherence to directives is less common, and norms which emphasize patient autonomy and independence have also been identified (Lorber, 1975). Further, although the legitimation of dependency is an explicit aspect of the sick role, in turn a burden is placed on the individual to want to try to get well. Assumption of this facet of the sick role is precluded in the instance of the terminal patient. Because of the deviant nature of the sick role for the terminal patient (i.e. absence of expectation for recovery) norms for patient behavior may differ from those for whom recovery is a possibility. Norms prescribing permissive treatment and exemption from sick role obligations would more likely characterize acute illness (Kassebaum and Baumann, 1965), although permissiveness may vary depending on whether the illness is chronic or terminal.