Bad news and first impressions: patient and family caregiver accounts of learning the cancer diagnosis

Abstract

Studies in medical journals regarding the delivery of a cancer diagnosis typically focus on a single clinic episode where the definitive news is disclosed to the patient by the physician. Far less research characterizes the diagnosis in the way patients and their family members often describe it: as a longitudinal, multi-sited search process culminating in a news-telling and realization event. This article analyzes lay accounts of learning a cancer diagnosis drawing on ethnographic interviews among a purposive sample of 28 patients recently diagnosed with leukemia, myeloma, or lymphoma and 30 of their family caregivers. The participants, recruited at a large cancer center in the United States, were asked to describe "the day" they learned the diagnosis. Narrative analysis revealed that in almost every case, detailed descriptions of preliminary events - such as the pace and sequence of testing; smooth or disorganized transitions between care providers; and the timeliness or delays in diagnosis - were used to contextualize the actual episode of hearing the diagnosis and reacting to the news. This study finds that patients' and caregivers' experience of the medical system prior to hearing the news played an important role in the way the news was ultimately internalized. The findings also provide empirical support for integrating lay perspectives on the diagnostic experience into future cancer disclosure guidelines.