The nature and timing of family-provider communication in late-stage cancer: A qualitative study of caregivers' experiences

Context: Family members of people with advanced cancer can experience intensified distress and uncertainty during the final stages of their loved one's illness. Enhanced comprehension about disease progression, symptom management, and options for care can help families adapt, cope, and plan for the future. Objectives: Guided by concepts from the Sense of Coherence Theory, which illuminates factors that contribute to adaptation in stressful situations, the objective of this study was to explore and describe family caregivers' accounts of the nature and timing of communication they had with a loved one's health care provider(s) during the advanced stages of cancer and before hospice enrollment. Methods: Retrospective in-depth interviews were conducted with caregivers of 46 people who died of cancer. Interviews were audiotaped, transcribed, and submitted to an iterative process of qualitative data analysis that included 1) systematic coding, 2) the use of data matrices to display summarized results and collapse the codes into themes, 3) and axial coding to characterize the nature of the themes. Results: Overall, communication with providers was found to be either 1) satisfactory or 2) unsatisfactory. Satisfactory communication was 1) compassionate, 2) responsive, and/or 3) dedicated. Unsatisfactory communication was described as 1) sparse, 2) conflicted, 3) contradictory, and/or 4) brink of death. Conclusion: Communication with health care providers is critical for helping family caregivers understand and manage the changes that accompany a life-limiting illness. Timely communication with information and meaningful discussion about disease progression can help families prepare for the advanced stages of an illness and approaching death.