Family caregiver descriptions of stopping chemotherapy and end-of-life transitions

PURPOSE: The purpose of this study was to describe family caregivers’ perspectives of the final month of life of patients with advanced cancer, particularly whether and how chemotherapy was discontinued and the effect of clinical decision-making on family caregivers’ perceptions of the patient’s experience of care at the end of life (EOL). METHODS: Qualitative descriptive design using semi-structured interviews collected from 92 family caregivers of patients with end stage cancer enrolled in a randomized clinical trial. We used a phased approach to data analysis including open coding, focused coding, and within and across analyses. RESULTS: We identified three patterns of transitions characterizing the shift away from active cancer treatment: 1) “We Pretty Much Knew,” characterized by explicit discussions about EOL care, seemingly shared understanding about prognosis and seamless transitions from disease-oriented treatment to comfort-oriented care, 2) “Beating the Odds,” characterized by explicit discussions about disease-directed treatment and EOL care options, but no shared understanding about prognosis and often chaotic transitions to EOL care, and 3) “Left to Die,” characterized by no recall of EOL discussions with transitions to EOL occurring in crisis. CONCLUSIONS: As communication and palliative care interventions continue to develop to improve care for patients with advanced cancer, it is imperative that we take into account the different patterns of transition and their unique patient and caregiver needs near the end of life. Our findings reveal considerable, and potentially unwarranted, variation in transitions from active treatment to death.