"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.