Striving to Live Well in Limbo: A Hermeneutic Exploration of the Family’s Heroic Journey Through the World of Chronic Cancer

Abstract

Over the past 20 years, numerous therapies have emerged which are changing the face of how we understand and treat advanced cancer. These drugs, new therapeutic approaches, and improved outcomes have enabled more patients to live longer with advanced cancer than ever before. However, the control achieved through these interventions is neither permanent nor consistent, and maintaining disease control in the advaced setting, requires ongoing treatments. More and more often, the term chronic cancer is being used to characterize advanced (stage III or IV) disease that is no longer curable, but is, or may become stable in response to treatment (Berlinger & Lederman Flamm, 2009). In addition to changing the language used to speak about incurable but treatable cancer, these new medical interventions are changing how individuals and their families experience this new phase of their cancer journey. In an effort to understand the needs of this emerging population, this qualitative study, informed by Gadamerian philosophical hermeneutics, was designed and conducted with the primary goal of understanding how living with chronic cancer is experienced by families. Unstructured interviews were conducted, recorded, transcribed verbatim, and analyzed with that goal in mind. The findings of this research highlight that living with chronic cancer is substantially different than living with either curative cancer or dying of cancer. Individuals and families who are living with incurable but treatable cancer inhabit the space between these two extremes, which is metaphorically referred to in this dissertation as the liminal world of chronic cancer. Participants spoke eloquently of their struggle to learn to live well in limbo. The metaphor of a heroic journey has been utilized to organize and reflect both on the complexity and similarities of the experiences that these families grappled with. This dissertation concludes by identifying how these research findings apply to oncology nursing practice and what innovations in education, professional development supports, and practice roles would contribute to improved support for families who are living with chronic cancer.