The needs of children receiving end of life care and the impact of a paediatric palliative care team: a retrospective cohort study

Abstract

Published data collected in hospital during the last year of life of children with life-limiting complex chronic conditions (CCC) is scarce, yet critical, for the implementation of paediatric palliative care (PPC). This study aims to describe the last year of life of children with CCC, in terms of clinical characteristics, hospital resources and the impact of referral to a hospital-based PPC team (PPCT). Using a retrospective cohort study, we examined the clinical records of children aged 1-18 years of age with CCC who died in a tertiary hospital between January 2016 and December 2020. Hospital resources utilised in the last year of life, therapies and procedures during the final week of life, decision to limit treatment (DLT), referral to the PPCT and place of death were analysed. Seventy-two patients (60% male) with a median age of 10.1 years were included. Most had ≥ 2 CCC (58%) with cancer as the most common diagnosis (47%). The group with ≥ 3 CCC (n = 23) had longer hospital stays (p = 0.041). Of the 17 patients referred to the PPCT, there was a higher frequency of DLT (94% vs. 40% in non-referred, p < 0.001), greater use of subcutaneous route (53% vs. 0%, p < 0.001), lower frequency of blood transfusions (12% vs. 55%, p = 0.002) and a lower proportion of deaths in the Intensive Care Unit (6% vs. 64%, p < 0.001).

Conclusions: Early implementation of PPC optimises the use of hospital resources, minimises invasive procedures and therapies, and may develop effective and sustainable alternatives which are better suited to the needs of children and families.

What is known: • In recent years, there has been an increased prevalence of complex chronic condition (CCC), which has led to more specialised and prolonged medical care until the end of life. • There are few paediatric studies on use of hospital resources and the invasiveness of procedures in the last year of life for children.

What is new: • This study is one of the few to provide a comprehensive characterisation of the last year of life of children/adolescents with CCC. • Timely referral to a specialised PPC team optimises the use of hospital resources, minimise invasive procedures and develop effective and sustainable alternatives which are better suited to the needs of children and/or families.

Keywords: Complex chronic conditions; End of life; Health resources; Paediatric palliative care.