Health and social care professionals’ experiences of providing end of life care during the COVID-19 pandemic: A qualitative study

Abstract

Background: Health and social care professionals’ ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. Aim: To explore health and social care professionals’ experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. Design: A qualitative interview study. Data were analysed using thematic analysis. Setting/participants: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March–June 2020) of the COVID-19 pandemic in the United Kingdom. Results: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. Conclusion: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.

“Saying goodbye all alone with no close support was difficult”- Dying during the COVID-19 pandemic: an online survey among bereaved relatives about end-of-life care for patients with or without SARS-CoV2 infection

“…Identifying the appropriate moment as the end-of-life and thus facilitating visits was reported as a challenge by health care professionals: estimating the remaining time wrong, relatives did not get time to say goodbye to the patient. Healthcare professionals had the impression that relatives would benefit from having the opportunity to visit when the dying patient is conscious and responsive and not just the hours before death [ 11 ]. The healthcare professionals’ description enhances the findings of the present study: it is essentially giving relatives and patients the chance to say goodbye early enough to avoid “missing the moment before” death and to say goodbye when the patient is responsive.…”

“…When relatives were not allowed to spend face-to-face time with the patient due to the pandemic situation, video or telephone calls could be a way to achieve connectedness. Hanna et al[ 11 ] describe the importance for family members to stay virtually connected with the dying family member in the last phase of life in the absence of visiting: it allows relatives to see for themselves that the patient is doing okay and creates a connection between the patient and the usual family life [ 11 ]. The present survey showed that only a few facilities provided online communication; the majority of the bereaved relatives were not given the opportunity.…”

“…Up to date, it is unknown what the intermediate and longer effects of these experiences will be. Recently published findings from the UK [ 9 – 11 ] describe the relatives’ need of visiting the seriously ill and dying patient, despite visiting restrictions. Here, health care professionals are faced with the challenge to recognise the dying phase early enough to allow the relatives to be present before death [ 10 , 11 ].…”

“…Recently published findings from the UK [ 9 – 11 ] describe the relatives’ need of visiting the seriously ill and dying patient, despite visiting restrictions. Here, health care professionals are faced with the challenge to recognise the dying phase early enough to allow the relatives to be present before death [ 10 , 11 ]. In the absence of having the opportunity to visit, the importance of connecting virtually with the patient increases.…”

Communication in palliative care during the COVID-19 pandemic: Lessons from rapidly changing, uncertain, complex, and high-stake interventions

“…Also in this issue, focusing on the virtual delivery of care, Hanna et al 12 report the challenges which UK health and social care professionals experienced when providing endof-life care to patients during the first wave of the COVID-19 pandemic. Over the telephone, communicating uncertainty around prognosis and conducting sensitive, nuanced endof-life conversations was difficult.…”