Dying in the Midst of a Pandemic: A Qualitative Study of Bereaved Relatives’ Experiences about their Family Members Deaths

Background: The global COVID-19 pandemic is having a major impact on experiences of dying and death. Family members perceptions about the quality of care for dying individuals and their preparedness for death may influence their psychological adjustment in grief. Aim: To explore relatives’ experiences and needs when their family member was dying during the COVID-19 pandemic to help inform current/future clinical practice and policy. Design: Participants, who had responded to a national on-line COVID19 survey, were invited to participate. Semi-structured interviews were conducted (via telephone or video-call) with relatives whose family member died during the pandemic. Data were analysed thematically. Results: 19 participants (12 female, 7 male) reflected experiences of deaths within hospital and care home settings, with and without COVIDrelated illness. Three themes were identified: (1) entering the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic, and (3) the importance of ‘saying goodbye’ in a pandemic. In the absence of direct physical contact, it was important for families to have a clear understanding of their family member’s condition, declining health and detailed, holistic information about their wellbeing. Staying virtually connected with them in the final weeks/days of life and having the opportunity for a final contact before death were fundamentally important. Health and social care professionals were instrumental to providing these aspects of care but faced practical challenges in achieving these. Conclusions: Health and social care professionals have an important role in mitigating the absence of relatives’ visits at end of life during a pandemic. Strategies include prioritising virtual connectedness, ensuring holistic, individualised care updates and creating alternative opportunities for relatives to ‘say goodbye’.