'i promised my husband i wouldn't leave him alone': Burdens due to visit restrictions for dying patients during the COVID-19 pandemic in Germany: A mixed-methods study of bereaved relatives

ABSTRACT

Background: For infection control reasons, dying patients in care facilities were isolated from their relatives due to visit restrictions, regardless of COVID-19 diagnosis. Aim: To explore bereaved relatives' experiences with visit restrictions of dying patients during the COVID-19 pandemic. Methods: Post-bereavement online survey plus additional semi-structured in-depth interviews to assess relatives' experiences with patients who died between 3.-11.2020 in different care settings, with/without COVID-19. Quantitative data were analysed descriptively including subgroup analysis and qualitative data by content analysis. The presented results focus on relatives' experiences with visit restrictions and are part of the PallPan project which develops a 'National Strategy for Palliative Care during a Pandemic'. PallPan is a project of the National Network University Medicine (NUM) to manage and overcome the pandemic. Results: 81 relatives responded to the online survey, 87.5% felt burdened by the pandemic-associated circumstances, 9.6% reported that even after the end of the official visitor ban, visits were not allowed in all facilities and the majority of relatives (65.4%) still felt burdened. Interviews with 32 relatives revealed the importance of visits respectively the burden relatives suffered when visits were prohibited. This caused difficulties in communication with the healthcare team about the patient's condition/treatment and reduced the possibility of (physical) closeness with the dying. Case-by-case decisions to allow companionship and farewell were valued by the bereaved. Conclusion: Visit restriction at the patient's end of life caused a great burden on relatives even months after the patient's death. Concepts to enable visits during the last days of life are needed including flexible pathways to ensure shared time and close companionship of patients and relatives.