Bereaved relatives’ experiences during the incurable phase of cancer: a qualitative interview study

OBJECTIVE: To examine bereaved relatives’ experiences from time of diagnosis of incurable cancer until death with specific emphasis on their role in the (end-of-life) decision-making concerning chemotherapy. DESIGN: Qualitative interview study. SETTING: Hospital-based. PARTICIPANTS AND METHODS: In-depth interviews with 15 close relatives of patients who died from non-small cell lung cancer or pancreatic cancer, using a thematic content analysis. RESULTS: All relatives reported that patients’ main reason to request chemotherapy was the possibility to prolong life. Relatives reported that patients receiving chemotherapy had more difficulty to accept the incurable nature of their disease than patients who did not. They mostly followed the patients’ treatment wish and only infrequently suggested ceasing chemotherapy (because of side effects) despite sometimes believing that this would be a better option. Relatives continuously tried to support the patient in either approaching the death or in attaining hope to continue life satisfactorily. Most relatives considered the chemotherapy period meaningful, since it sparked patients’ hope and was what patients wanted. Cessation of chemotherapy caused a relief but coincided with physical deterioration and an increased caregivers’ role; many relatives recalled this latter period as more burdensome. CONCLUSIONS: Relatives tend to follow patients’ wish to continue or cease chemotherapy, without expressing their own feelings, although they were more inclined to opt cessation. They experience a greater caregiver role after cessation and their feelings of responsibility associated with the disease can be exhausting. More attention is needed to reduce relatives’ distress at the end of life, also to fully profit from this crucial form of (informal) healthcare.