Palliative care provision for children in general practice: A retrospective cohort study

In the Netherlands, around 750 children (0-21 year) die annually from potentially palliative conditions. The majority of these children reside at home, receiving care from hospital services and primary care. This study aims to examine general practice utilization for pediatric palliative care patients in the last 2 years of life.

A retrospective cohort study was performed using the routine healthcare database of the Julius General Practitioners' Network. The main outcome for general practitioner (GP) utilization was the number of GP consultations for children in the last 3 months of life. Participants were included who were children (0-21 years), and deceased in the period 01-01-2013 to 31-12-2022 from an underlying chronic condition. Data were analyzed using descriptive statistics and tested for differences in provided care between children who died in hospital and who died at home.

Forty-eight children from 32 GP practices met inclusion criteria. Median age was 10.0 years (interquartile range [IQR] 1.5-17.1). Common diagnoses were oncological (29%), congenital (29%), and metabolic conditions (23%). Ninety-six percent of children had contact with their GP in the last 3 months (median 7 consultations, IQR 3.0-10.0), i.e. 26 children who died in hospital had median 3.5 GP consultations compared to 20 children who died at home median 9.5 GP consultations (p < 0.001). Thirty-five percent of children were documented as being palliative, with 54% having some form of advance care planning discussions documented.

These results demonstrate that GPs are highly involved in providing pediatric palliative care. The palliative nature of these children and advance care planning discussions are not routinely documented and/or performed by GPs. Further insights into guidance that supports GPs, in collaboration with other healthcare professionals, in providing palliative care for children at home and their families are needed.