An Approach to Understanding the Interaction of Hope and Desire for Explicit Prognostic Information among Individuals with Severe Chronic Obstructive Pulmonary Disease or Advanced Cancer

BACKGROUND: Physicians often report that they are reluctant to discuss prognosis for life-threatening illnesses with patients and family out of concern for destroying their hope, yet there is little empirical research describing how patients and family incorporate their needs for hope with desires for prognostic information. OBJECTIVE: We conducted a qualitative study to examine the perspectives of patients, family, physicians, and nurses on the simultaneous need for supporting hope and discussing prognosis. METHODS: We conducted in-depth longitudinal qualitative interviews with patients with either advanced cancer or severe chronic obstructive pulmonary disease (COPD), along with their family, physicians, and nurses. We used principles of grounded theory to analyze the transcripts and evaluated a conceptual model with four diagrams depicting different types of approaches to hope and prognostic information. RESULTS: We interviewed 55 patients, 36 family members, 31 physicians, and 25 nurses representing 220 hours of interviews. Asking patients directly "how much information" they wanted was, by itself, not useful for identifying information needs, but in-depth questioning identified variability in patients' and family members' desires for explicit prognostic information. All but 2 patients endorsed at least one of the diagrams concerning the interaction of hope and prognostic information and some patients described moving from one diagram to another over the course of their illness. Respondents also described two different approaches to communication about prognosis based on the diagram selected: two of the four diagrams suggested a direct approach and the other two suggested a cautious, indirect approach. CONCLUSIONS: This study found important variability in the ways different patients with life-limiting illnesses approach the interaction of wanting support for hope and prognostic information from their clinicians. The four-diagram approach may help clinicians understand individual patients and families, but further research is needed to determine the utility of these diagrams for improving communication about end-of-life care.