Background COVID-19 impacted end-of-life experiences for all people bereaved during the pandemic, whilst also affecting the services that support them (Harrop, Goss, Farnell, et al. Palliat Med. 2021;35(10):1985–97). Evidence suggests that the grief experiences of those bereaved during the height of the pandemic may be even more devastating than in usual circumstances (Torrens-Burton, Goss, Sutton, et al. Palliat Care Soc Pract. 2022;16:26323524221092456; Smith, Wild, Ehlers. Clin Psychol Sci. 2020;8(3):464–76; Selman, Farnell, Longo, et al. Palliat Med. 2022;36(4):717–29). Restrictions on services, such as hospices, care homes and third sector organisations, led to inadequate cancer care from specialties usually well equipped to provide sensitive end-of-life care (Smith, Wild, Ehlers. 2020).
Aims To explore the end-of-life care experiences of people whose friends/relatives died of cancer during the COVID-19 pandemic, including: (a) impacts on coping and wellbeing; (b) impacts of restrictions in different care settings; (c) features of good and sub-optimal care, communication and support, and (d) implications for improving patient care and family support in cancer and palliative care settings.
Methods Secondary, inductive thematic analysis of qualitative survey and interview data (survey N=156; interview N=10), collected as part of a national COVID bereavement study (Harrop, Goss, Farnell, et al. Palliat Med. 2021;35(10):1985–97). Baseline surveys and first telephone interview data were used.
Results Four key themes were identified: The impact of COVID-19 on contact with end-of-life patients; Mixed experiences of support; Poor communication from health and social care professionals (HSCP); Prioritisation of COVID-19 and the impact on patient care. Hospital care was perceived more negatively than community care in almost all areas, with support from cancer charities and district nurses appreciated the most. Almost all participants felt that COVID-19 was detrimentally prioritised over care for their relative/friend.
Conclusions These experiences reflect those described in all cause COVID bereavement literature, (Harrop, Goss, Farnell, et al. Palliat Med. 2021;35(10):1985–97) however, with greater emphasis on the injustice of de-prioritising cancer care, disregarding regulations in favour of time together and appreciation for compassionate community services. As services re-build post-pandemic, improvements in communication around hospital palliative care, significant investment into community care, and improved service integration is recommended.