Confronting the prospect of dying. reports of terminally ill patients

Abstract

To identify dominant themes characterizing patients' perspectives on death during their last months of life, an ethnographic technique of interviewing and an inductive qualitative approach to analysis were employed. Serial, in-depth, semi-structured interviews were conducted with 30 patients (mean = 4.2 interviews/patient) followed as close to the time of death as possible. The interviews were audiotaped, transcribed, and subjected to independent analysis by both authors using standard qualitative techniques. Patients were referred to the study by Beth Israel Medical Center clinicians if they had a diagnosis of a life-threatening condition of which they were aware; were likely to die within one year according to their physician; had experienced symptoms of the illness; were sufficiently alert to discuss the topics addressed in the study; conversed easily in English; and consented to participate. Outlooks on dying were thoroughly grounded in patients' frames of reference for giving meaning and consistency to other major events in their lives. Seven motifs characterizing these perspectives on death were distilled: struggle (living and dying are difficult), dissonance (dying is not living), endurance (triumph of inner strength), coping (finding a new balance), incorporation (belief system accommodates death), quest (seeking meaning in death), and volatile (unresolved and unresigned). Patients demonstrated a striking capacity for coherence, integrating their responses to dying with broader motifs in their life stories. Health care providers would be well advised to become aware of such motifs so as to better understand patient preferences for care and responses to treatment recommendations.