Cancer Caregivers' Prognostic and End-of-Life Communication Needs and Experiences and their Impact

Context. Family caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers' communication experiences or the impact of these experiences on patients and caregivers at EOL. Objectives. Investigate cancer caregivers' communication experiences and potential impact on patient and caregiver outcomes. Methods. Semistructured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes. Results. Caregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating-often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers' and patients' discordant com-munication needs, limited opportunity for caregivers to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers' abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement. Conclusion. Caregivers often facilitate essential communication for patients with advanced cancers yet face challenges suc-cessfully fulfilling their own and patients' communication needs, particularly surrounding prognostic and end-of-life conversa-tions. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs. J Pain Symptom Manage 2023;65:16-25. (c) 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.