Intensity of End-of-Life Care Among Patients with Cerebral Palsy: A 12-Year Nationwide Study.

Background

For noncancer neurological conditions, uncertain trajectories complicate prognostication and end-of-life (EOL) decision-making. Similar challenges may arise in some patients with cerebral palsy (CP), yet population-level evidence on EOL care remains limited.

Objectives

To characterize EOL care among patients with CP across the lifespan by describing in-hospital deaths, examining care intensity during the last 7 days of life, and identifying associated patient-level and hospital-level factors.

Design

Nationwide retrospective cohort study using the Japanese Diagnosis Procedure Combination/Per-Diem Payment System inpatient database, April 2010-March 2022. SETTING/SUBJECTS Patients aged ≥1 year with CP who died in participating hospitals in Japan, categorized as children (1-18 years), young adults (19-39 years), and adults (≥40 years).

Measurements

Intensive EOL care during the last 7 days of life was assessed using seven interventions. High-intensity care was defined as ≥3 interventions. Multivariable analyses focused on children.

Results

We analyzed 2482 patients; median age was 49 years. EOL care intensity was highest among children; 47.7% received cardiopulmonary resuscitation (CPR) and 52.3% received high-intensity care. Among children, shorter hospital stays were associated with CPR and high-intensity care, and nonpediatric departments with CPR. Deaths were widely distributed across hospitals; in each age group, more than half of hospitals experienced only one death over 12 years.

Conclusions

EOL care intensity was highest among children, with shorter hospital stays and treatment in nonpediatric departments associated with selected intensive interventions. Deaths were widely distributed across hospitals. These findings highlight the importance of continuity of decision-making support and information sharing across departments and institutions.