Findings of the National End of Life Survey | 2023
Using the methodology described in Appendix 3, questions where participants reported good care experiences and questions where there was the most room for improvement were identified. These questions were also highlighted due to their strong relationship with participants’ overall ratings of the care both they and their relative or friend received at home, in nursing homes or residential care facilities, in hospitals and hospices. 6 Participants highlighted some areas of good care received during their relative or friend’s last months and days of life. For example, most participants had confidence and trust in the healthcare staff caring for their relative or friend. Participants also said that their relatives or friends were treated with respect and dignity and with kindness and compassion in the last two days of their life. In addition, participants felt that staff did everything they could to help manage their relative or friend’s symptoms (such as nausea, constipation, breathing difficulties or restlessness), and explained their relative or friend’s condition and care in a way they themselves could understand. A number of areas for improvement in end-of-life care were also identified using the methodology in Appendix 3. For example, some participants felt that their relative or friend did not get help from healthcare staff as soon as they needed it, as well as help and support with their emotional needs (such as feeling worried, feeling anxious, feeling low). Some participants felt that there was a lack of coordination between healthcare staff during the last two days of their relative or friend’s life. In addition, participants said that they were not given enough help and support by healthcare staff to talk to children or young adults about their relative or friend’s illness. Participants’ responses relating to different care settings also provided a number of important insights. Across each of the four main settings included in the survey, participants highlighted their confidence and trust in staff, the kindness and compassion of staff, as well as symptom management and the respect and dignity with which the person who died was treated. For those who received care at home, access to out of hours general practitioner (GP) care and support for religious and spiritual needs were two of the lower-scoring questions. While for those who received care in a nursing home, support to be involved in family events, and being involved in decision-making were two of the lower-rated areas. Participants whose relative or friend received care in a hospital identified emotional support for the person who died, and getting help when it was needed as two lower- scoring areas. For those who died in a hospice, support for involvement in family events and sensitive communication at end of life were lower-rated areas.
6 Relationships were calculated based on correlations of relevant questions with overall experience ratings for each setting and or questionnaire section: Q21, Q34, Q47, Q60, Q91, Q100. Appendix 3 also shows areas of good experience and areas needing improvement for each care setting included in the survey.
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