Advanced care planning 5 years on: An observational study of multi-centred service development for children with life-limiting conditions

Aim The purpose of this study was to compare how planning has developed over the 5 years across a range of children's health care services in a single U.K. city. Background Advanced planning for end of life care (EOLC) is an essential component of care for children with life-limiting and life-threatening (LLLT) conditions. We report the findings of a follow-up study (R2) completed 5 years after the initial review (R1). Documented advanced care planning (ACP) was measured against published children's palliative care standards. Method We used a manual retrospective review of health care records, using focused data collection. Inclusion criteria were children who died before the age of 18 years, as a consequence of an LLLT condition, over an 18-month period and had lived locally to a regional children's hospital. Results The first review (R1) included 48 patients with 114 health care records: median age at death 0 years (range 0 to 18 years). The follow-up review (R2) included 47 patients, with 80 health care records: median age at death 2 years (range 0 to 17 years). The proportion of records containing evidence of a prognostic discussion had risen from 73% (R1) to 91% (R2), p < 0.005. The proportion of health care records with ACP was consistent between R1 and R2 (75% and 72%, respectively). An ACP tool was found to be in regular use in R2 compared with no examples in R1. The acute hospital trust plans were more detailed in R2 than R1. The proportion of cases where preferred location of death matched actual location was stable, around half. Conclusions EOLC conversations increased over the 5 years studied. In the acute hospital trust, there is evidence of a better quality ACP although quantity is stable: enabled by the implementation of an ACP tool and education programme. Challenges remain in engaging children and young people in advanced planning.