7 Views of care at end of life: An action research study exploring the best ways of eliciting patient and family views of end of life care and giving real time feedback in acute hospitals

Johnston, Bridget; Khonsari, Sahar; O’Neill, Claire

Abstract

Introduction: A high proportion of deaths occur in hospitals in Scotland. To improve care for the dying, it is imperative to measure the quality of care. However, there is no consensus on the optimal tool or timing post-bereavement to assess end-of-life care in hospitals.

Methods: This was a participatory action research study guided by the principles of ‘Appreciative Inquiry’ that sought to explore views of care at end of life in partnership with patients, relatives, and healthcare staff and co-create, and evaluate a real-time feedback tool to improve quality of care in acute hospitals in NHS Greater Glasgow and Clyde. In the exploratory phase of the study, in accordance with ‘diagnosing’ and ‘action planning’ of the action research cycle, we conducted a rapid meta systematic review, analysed people stories on Care Opinion, a nationally endorsed non-profit feedback online platform, and interviewed to patients with life-limiting conditions bereaved relatives), clinical and non-clinical staff about their views of care at the end-of-life and how we can improve communication with people who are at the end-of-life. In the ‘Action’ and ‘Evaluation’ phases, we recruited seven wards with the highest mortality rate across NHS Greater Glasgow and Clyde to test and evaluate the feedback tools chosen by the participants in the first phase of the study.

Results: Findings from the exploratory phase showed that the study participants had a positive insight to staff professionalism in providing compassionate and dignified care and family support. Areas needing improvement included staffing pressure and communication affected by multiple factors including COVID-19. However, such problems should be fed back to hospitals in order to identify causes and prompt improvement. In terms of finding out the best ways of getting feedback from patients and their family members. We tested 2 tools: ‘condolence’ phone call from the area where the person who mattered to them died and ‘Care Of the Dying Evaluation’ (CODE) questionnaire. Recommendations for future practice will include the tools with some modifications.

Conclusion: Good quality of end-of-life care and quality of dying in terminally ill patients impacts bereavement for families and had a ripple effect for patients, staff and families. The challenging time of the covid 19 pandemic compounded end of life issues. Findings from this study will guide the implementation of a patient and family feedback tool into practice across NHS Greater Glasgow and Clyde and wider in Scotland aimed at achieving a good quality of dying for patients with life-limiting condition and post-bereavement support for bereaved relatives.

Citation

Johnston, B., Khonsari, S., & O’Neill, C. (2023, March). 7 Views of care at end of life: An action research study exploring the best ways of eliciting patient and family views of end of life care and giving real time feedback in acute hospitals. Paper presented at The Palliative Care Congress: Sustaining Each Other, Growing Together, Edinburgh, Scotland

• Presentation Conference Type: Conference Paper (unpublished)
• Conference Name: The Palliative Care Congress: Sustaining Each Other, Growing Together
• Start Date: Mar 16, 2023
• End Date: Mar 17, 2023
• Online Publication Date: Mar 14, 2023
• Publication Date: 2023-03
• Deposit Date: Jan 25, 2024
• DOI: https://doi.org/10.1136/spcare-2023-pcc.7
• Public URL: http://researchrepository.napier.ac.uk/Output/3489671