In 2023, Ireland conducted its first National End of Life Survey, inviting bereaved individuals to share their experiences regarding the care provided to their loved ones in their final months and days. This comprehensive survey aimed to delve into various aspects of end-of-life care across different settings, capturing the perspectives of those directly impacted by these services.
The survey targeted individuals who had registered the death of a family member or friend between September 1st and December 31st, 2022. Excluding certain types of deaths, such as sudden, maternal, and child deaths, the survey encompassed a wide range of participants. Survey packs were distributed via post between March and May 2023, with both online and postal response options available.
The survey questionnaire comprised 110 questions, covering crucial aspects such as pain management, respect, dignity, emotional support, communication with healthcare staff, and provision of information. A meticulous development process involving international reviews, focus groups, gap analyses, and Delphi studies ensured the relevance and comprehensiveness of the questions.
Participants were asked about end-of-life care provided in various settings, including hospitals, hospices, nursing homes, and at home. Detailed questions tailored to each setting aimed to capture nuanced experiences and perceptions. Of the 9,446 individuals invited to participate, 4,570 responded, yielding a response rate of 48.4%. The majority of respondents were females aged between 50 and 69 years. The survey also highlighted the demographics of the deceased, with a significant proportion being aged 80 or older.
Understanding the experiences of bereaved individuals is pivotal in assessing healthcare quality and safety, particularly in end-of-life care. Recognised as vulnerable stakeholders, their insights provide valuable feedback for improving services. The survey aligns with national standards emphasising dignity, autonomy, and holistic care for individuals nearing the end of life.
Three open-ended questions prompted participants to share their experiences and suggestions. A rigorous framework approach was employed to analyse over 9,500 comments, identifying key themes and codes. Insights ranged from commendations for respectful and dignified care to suggestions for enhanced communication and resource availability.
The National End of Life Survey 2023 represents a significant milestone in Ireland’s healthcare landscape, shedding light on the experiences of bereaved individuals and offering valuable insights for future improvements. By prioritising dignity, compassion, and effective communication, healthcare providers can strive towards delivering person-centred end-of-life care that honours the needs and preferences of both patients and their loved ones.