How the COVID-19 pandemic affects palliative care inpatients and outpatients without a COVID-19 diagnosis and their families-a qualitative interview study

Background: During humanitarian crises like a pandemic, healthcare systems worldwide face unknown challenges. It is likely that the COVID-19 pandemic (C-pandemic) affects care structures and processes in palliative care and thus the patients cared for. Little is known about the situation of non-COVID-19 palliative patients during the pandemic. Aim: The study aims to explore and describe the effect of the current C-pandemic on the needs of patients without a COVID-19 diagnosis and their relatives in palliative care units and specialist palliative home care. Methods: Qualitative, semi-structured interviews with patients and their relatives in palliative care units or specialist palliative home care, verbatim transcription, and qualitative content analysis following the framework approach. The framework is developed inductively. Results: 31 interviews were conducted with patients/relatives (16/15) in palliative care units/specialist palliative home care (20/11) from June 2020-January 2021. Identified needs are mostly independent of the C-pandemic and correspond to those arising from a palliative life situation in general. Themes related to the C-pandemic were (1) concerns about an infection, (2) concerns about the overall social situation, and (3) effects of the pandemic on general care. We identified a change in the relatives' role as caregivers: Restriction on visits limit relatives to fulfill their role in palliative care units. In specialist palliative home care, relatives are concerned about the balance between preserving social contacts at the end of life and preventing infection by reducing social contacts. Conclusion: Needs at the end of life remain identical in the context of the C-pandemic but become more multifaceted as additional C-pandemic needs emerge. With regard to the C-pandemic special attention should be given to the needs of relatives as caregivers.