Findings of the National End of Life Survey | 2023
Conclusion In total, 4,570 bereaved family members and friends participated in the ȴrst National End of Life Survey. Participants shared their experiences of the care their relative or friend received in the last months and days of their life, including the care they received at home, in a nursing home or residential care facility, in hospital and in a hospice. It was clear that the people who died experienced a variety of pathways of care, involving multiple care settings and services in the last months and days of their lives. While most participants (89%) rated the overall care that their relative or friend received as ‘good’ or ‘very good’ and highlighted positive aspects of the care they received, a number of areas for improvement were also identiȴed. When asked to describe in their own words what could be improved, participants highlighted issues relating to the continuity, availability and responsiveness of care; and a desire for clearer and more consistent communication. Other areas for improvement included the need for healthcare sta to provide help as soon as the person who died needed it, as well as help and support with their emotional needs (such as feeling worried, feeling anxious, feeling low). In addition, participants said that they were not given enough help and support by healthcare sta to talk to children or young adults about their relative or friend’s illness. Participants also highlighted numerous areas of positive experience in their relative or friends’ care. For example, participants highlighted the respect and dignity with which their relative or friend was treated. In addition, a large number of comments praised sta for the care they provided, as well as the physical, spiritual and emotional support that was made available. Most participants had conȴdence and trust in the healthcare sta caring for their relative or friend, and said that they were treated with respect and dignity and with kindness and compassion in the last two days of their life. In addition, participants felt that sta did everything they could to help manage their relative or friends’ symptoms (such as nausea, constipation, breathing diɝculties or restlessness), and explained their relative or friend’s condition and care in a way they themselves could understand. The survey included people who received care or died in various settings including hospitals, nursing homes, hospices and in their homes. In many cases, the people who died received care across more than one of these settings in the last months and days of their lives. Just under 40% of participants said that their relative or friend had died in a hospital, followed by 27% who died in a nursing home or residential care facility, 22% who died at home, and 11% who died in a hospice 55 . Participants whose relative or friend died in a hospice were more likely to rate their end-of-life care as ‘good’ or ‘very good’ (98%), when compared with a nursing home (92%), hospital (84%) or those who died at home (89%). There were a number of notable dierences in responses to questions based on where the person died. For example, participants whose relative or friend died at home were most likely to say that they had died ‘in the right place’ (99%), compared with 94% for hospices, 89% for nursing homes and 75% for hospitals.
55 In total, eight participants said that their relative or friend died in an ambulance or ‘somewhere else’.
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