The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths

TL;DR

This study shows that specialized pediatric palliative care improves advance care planning and reduces aggressive end-of-life treatments in children and young adults.

Contribution

The study demonstrates that specialized palliative care leads to earlier advance care planning and less intensive end-of-life interventions in hospitalized pediatric patients.

Findings

Specialized palliative care was associated with more and earlier advance care planning.

Patients receiving palliative care had less mechanical ventilation and CPR but more opioid use.

Earlier advance care planning was linked to palliative care, non-infant age, and neurological/neuromuscular diseases.

Abstract

Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC) on advance care planning (ACP) and patterns of end-of-life care for patients who died in the hospital.

This is a retrospective cohort study of medical records extracted from a clinical data warehouse, covering patients who died aged 0–24 in an academic tertiary children’s hospital in South Korea. Participants were categorized into before (2011–2013; pre-period) and after (2017–2019; post-period) the introduction of an SPC service. Within the post-period, patients were further categorized into SPC recipients and non-recipients.

We identified 274 and 205 patients in the pre-period and post-period, respectively. ACP was conducted more and earlier in the post-period than in the pre-period, and in patients who received palliative care than in those who did not. Patients who received SPC were likely to receive less mechanical ventilation or cardiopulmonary resuscitation and more opioids. A multivariable regression model showed that earlier ACP was associated with not being an infant, receiving SPC, and having a neurological or neuromuscular disease.

SPC involvement was associated with more and earlier ACP and less intense end-of-life care for children and young adults who died in the hospital. Integrating palliative care into routine care can improve the quality of end-of-life care by reflecting patients’ and their families’ values and preferences.

The online version contains supplementary material available at 10.1186/s12904-024-01448-w.

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