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

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 five years after the initial review (R1). Documented advanced care planning (ACP) was measured against published children's palliative care standards.

THE PURPOSE: to compare how planning has developed over the five years across a range of children's health care services in a single UK city.

METHOD: Manual retrospective review of health care records, using focused data collection.

INCLUSION CRITERIA: children who died before the age of 18 years, as a consequence of a 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 to 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 five years studied. In the acute hospital trust, there is evidence of 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.