Surviving a Terminal Diagnosis: the Ultimate Lifelong Learning Experience

Abstract

Every year in the United States, cancer accounts for one in four deaths. As the pool of those who have received diagnoses increases, more individuals can be encountered who have survived a terminal diagnosis or exceeded expected time limits for survival. Perhaps even more extraordinary, many of these consider it the "best thing" that ever happened to them. These are the modern eras' "mythical" heroes; they return bearing maps for our own eventual journeys.

This study used a grounded theory research approach to illuminate the phenomenon of terminal diagnosis survivorship as evidenced in the psycho/social/spiritual learning process. The unit of analysis is the psychosocial and spiritual learning process as discovered and developed from three cases of individuals who described being positively transformed after receiving a terminal diagnosis. Three research questions were examined: (a) What are the components (e.g., coping strategies, problem solving techniques, emotion management) of the learning process employed by three cancer patients who have experienced a terminal diagnosis? (b) In what ways did the phenomenal meaning of their lives change as they coped with the trauma of a terminal diagnosis followed by remission persisting a significant time past doctors' predictions? (c) What changes did they make in their lives, viewed from a holistic perspective, including thought processes, healthcare, emotion, spirituality and changes in their social lives? A comparative analysis of tape recorded interviews yielded the data resulting in a six-phase model of terminal diagnosis survivorship delineating a psycho/social/spiritual transformational learning process.

Death acceptance emerged as a central organizing construct facilitating transformational changes in those given a terminal diagnosis resulting in a constellation of attitudinal and behavioral change. This model challenges and extends theory in adult learning and post traumatic survival by challenging the heavily rational and cognitive based theories of these fields, emphasizing the importance of emotions, altered states, extrarational experiences and spirituality. This model also explicates the role of denial that can alternatively hamper, facilitate or place on hold movement toward death acceptance, the ultimate transformative agent. Additionally, this model elucidates the importance of holding environments on both sustaining and eliciting transformational and developmental change.