"Why Couldn't I Go in To See Him?" Bereaved Families' Perceptions of End-of-Life Communication During COVID-19

BACKGROUND/OBJECTIVE: The COVID-19 pandemic has resulted in rapid changes to end-of-life care for hospitalized older adults and their families, including visitation restrictions. We examined bereaved families' perceptions of the quality of end-of-life communication among Veterans, families and staff in Veterans Affairs (VA) medical centers during the COVID-19 pandemic. DESIGN: Qualitative descriptive study using data from a survey of bereaved family members of Veterans administered from March-June 2020. Data were analyzed using qualitative content analysis. SETTING: VA medical centers with the highest numbers of COVID-19 cases during the study period. PARTICIPANTS: Next-of-kin of 328 Veterans who died in one of 37 VA medical centers' acute care, intensive care, nursing home, or hospice units. MEASUREMENTS: Open-ended survey questions (response rate = 37%) about family member's perceptions of: (1) communication with the healthcare team about the patient, (2) communication with the patient, and (3) use of remote communication technologies. RESULTS: Bereaved family members identified contextual factors perceived to impact communication quality including: allowing family at the bedside when death is imminent, fears that the patient died alone, and overall perceptions of VA care. Characteristics of perceived high-quality communication included staff availability for remote communication and being kept informed of the patient's condition and plan of care. Low-quality communication with staff was perceived to result from limited access to staff, insufficient updates regarding the patient's condition, and when the family member was not consulted about care decision-making. Communication quality with the patient was facilitated or impeded by the availability and use of video-enabled remote technologies. CONCLUSION: Communication between patients, families, and healthcare teams at the end of life remains critically important during times of limited in-person visitation. Families report that low-quality communication causes profound distress that can affect the quality of dying and bereavement. Innovative strategies are needed to ensure that high-quality communication occurs despite pandemic-related visitation restrictions.