Findings of the National End of Life Survey | 2023
What questions were asked in the survey? The National End of Life Survey asked participants about the end-of-life care provided to their relatives or friends in the last months and days of life. The survey included questions on pain management, respect and dignity, emotional support, communication with healthcare sta and the provision of information. The survey questionnaire can be found in Appendix 4. The questionnaire included a total of 110 questions, of which three questions were free text, asking participants to describe their experiences in their own words. In total, 239 people 9 , including bereaved relatives, specialist palliative care sta, general practitioners, medical consultants and clinical medical directors, nursing sta based in the community, in nursing homes, in hospices and in acute hospitals, home care support sta, health and social care professionals, academic sta, policy makers, service funders and regulators were involved in developing and selecting the questions most relevant to the Irish context. (1) The development steps are outlined below: 1. An international review of bereaved relative experience surveys identiȴed the international experience and best practice with regard to the models and methodologies employed to deliver a National End of Life Survey. (2) 2. Focus groups involving bereaved relatives, representatives from voluntary and advocacy organisations, health and social care service sta as well as policymakers and healthcare regulators identiȴed the key themes to be included in the survey. 3. A gap analysis was undertaken, which consisted of reviewing national standards and policies ensuring that all aspects of care that are important from an Irish context are captured. 4. A two-round Delphi study was undertaken to identify priority questions to be included in the questionnaire 10 . 5. Picker Institute Europe checked the measurement and analytic quality of the questions. 6. Cognitive interviews with bereaved relatives who have used health and social care services were undertaken to assess the clarity and appropriateness of the proposed National End of Life Survey questionnaire. 7. A further review was undertaken by the National End of Life Survey advisory group members, with representatives of bereaved relatives, the Department of Health, HIQA, the HSE and special remit of organisations representing family carers, palliative and bereavement care.
9 There were 68 focus group participants, 163 people took part in the Delphi study, and eight cognitive interviews with recently bereaved people. 10 In the Delphi study, participants were asked to rate and rank potential questions for inclusion in the ȴnal questionnaire.
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