Abstract
Background: In the Republic of Ireland, national health policy highlights the importance of engaging with people who use health and social care services and capturing their experiences to improve care. It was identified in 2020 that there was no consistent national approach to capture the experience of end-of-life care in Ireland and a survey model and methodology were subsequently developed. In March 2023, the National End of Life Survey was the first national survey to ask bereaved relatives about the care provided to a family member or friend in the last months and days of their life. The aim of the National End of Life Survey (NELS) is to learn from people’s experiences of end-of-life care in order to improve services provided both to people who are dying, and to their loved ones, as well as replicate areas of good practice across services and settings.
Methods: The National Care Experience Programme, which is a partnership between the Health Service Executive (the public health provider), Health Information and Quality Authority (the health service regulatory body) and the Department of Health (the national policymaker), developed and implemented the survey and will act on findings from the survey. The survey design was based on reviews of comparable national and international surveys and engagement with relevant stakeholders, through Delphi Studies, a gap analysis, focus groups and cognitive testing. Extensive engagement was undertaken with people with lived experience of palliative care, their families and their carers via focus groups to decide the survey model and methodology. A communications plan was successfully implemented to maximize the survey’s response rate. This included raising awareness of the survey via social media, information webinars and radio advertisements.
The survey questionnaire contained 110 questions, three of which were open-ended and 107 of which were closed-ended. The survey captured experiences of care provided in the last three months of life in hospitals, hospices, nursing homes and the home, including where a person died. This meant that some respondents fed back on just one setting, whereas other respondents fed back on multiple care settings. Questions regarding the standard of coordination between services and healthcare staff who cared for a person in last three months of their life were included.
Results: In total, 9,446 bereaved relatives were invited to participate in the survey, of whom 4,570 bereaved relatives chose to take part, meaning a 48% response rate. Preliminary findings indicate that the majority of respondents reported that their loved ones were treated with respect and dignity. However, respondents also reported that the care their loved one received could been coordinated better, both across and within the services and settings where they received end-of-life care.
Conclusion: The survey represents the first standardised national approach to capturing and using the experience of bereaved relatives to improve end-of-life care in Ireland. The findings of the survey will provide healthcare professionals who are planning and delivering end-of-life care with evidenced-based data on what works well and where improvements are needed across care settings and services.