Pediatric Home-Based Palliative Care and Hospice: Characterizing and Comparing the Populations

Home-based palliative care (HBPC) and hospice programs offer support for children with complex life-shortening conditions. However, there is little comparison of the characteristics and care trajectories of children and young adults enrolled in HBPC versus hospice, particularly across different age groups.

To compare the characteristics of children and young adults who received HBPC and/or hospice and identify differences and similarities between these populations.

A retrospective cohort study of children birth-21 years of age who received HBPC and/or hospice in their home between 1/2019-12/2022 at a single site. Data were manually extracted from the electronic health record. Statistical analyses included descriptive statistics, chi-square or Fisher's exacts tests for categorical variables, and Mann-Whitney U tests for non-normally distributed continuous variables. Subgroup analyses excluded children <1 year of age due to differences unique to population including utilization of perinatal palliative care or palliative care in the neonatal intensive care unit.

Of 113 participants, hospice recipients were younger (median 2 vs. 7 years; P = 0.033), more likely to have an oncologic diagnosis, and had a higher mortality during the study period (69.6% vs. 22.1%; P < 0.001). HBPC participants had more hospital admissions, longer inpatient stays, and more outpatient visits. Subgroup analyses of children ≥1 year revealed diagnosis and code status differences, with hospice participants more likely to have 'allow natural death' orders and experience a code status change.

Among children and young adults, significant differences exist between those receiving HBPC and those receiving hospice care, particularly in age, diagnosis, and healthcare utilization.