End-of-life care by specialist palliative care teams: 10-year retrospective satisfaction evaluation

The Association for Palliative Medicine (APM) ran a national Specialist Palliative Care (SPC) service evaluation from 2013, using the Family Satisfaction with End-of-Life Care (FAMCARE-2) questionnaire to measure the satisfaction of bereaved main caregivers with SPC services.

This feature article reviews ten years of the FAMCARE-2 audit (2013-2022), summarising data from bereaved carers via SPC teams alongside a one-off survey involving the service leads.

During the decade, 573 SPC teams across the UK returned 12 573 completed FAMCARE-2 questionnaires, representing 160 SPC services, with a mean of 1048 questionnaires per annum (804-1668). Responses spanned three settings: hospice (48%), home (39%) and hospital (13%).Bereaved caregivers reported highest satisfaction for patients' dignity; 92.2% of respondents were satisfied, while dissatisfaction was highest with the speed deceased patients' symptoms were treated (6.2%). There was no significant difference in satisfaction rate between different SPC teams (home, hospital, hospice) with limited year-to-year variation in responses (Kruskal-Wallis test η2: -0.17).Participation by community-based home care teams increased during the 10-year period, but reduced for hospital specialist teams. The number of questionnaires returned decreased by 40%.Notably, of those responding to the one-off survey, 90% of services found FAMCARE-2 valuable for learning, inspection or reflective practice.

Bereaved caregivers consistently expressed satisfaction with SPC services across settings over the 10-year period. Despite limited applicability of findings due to annual decline in participation and lack of demographic data, FAMCARE-2 remains the only nationally used tool for evaluating SPC in the UK.