Referral and Care Processes in Hospitalized Children Referred to Pediatric Palliative Care Services (S533)

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      1. Describe who, how, and why pediatric patients are referred to inpatient pediatric palliative care services
      2. Describe inpatient pediatric palliative care service delivery for children with serious illness
      3. Explain how standardized inpatient pediatric palliative care data can be used to benchmark clinical practices

      Original Research Background

      The Pediatric Palliative Care Quality Network (PedPCQN) is a collaborative of sites collecting standardized inpatient pediatric palliative care (PPC) operational, demographic, and outcome data.

      Research Objectives

      Describe referral and care processes for hospitalized children with serious illness who were referred for inpatient PPC services.


      We reviewed 1,576 encounters between January 2016 and September 2019 for children ages 0-18 referred for PPC services from 5 hospitals across the United States. Programs were urban, offering PPC.


      Median age was 6.0 years (interquartile range [IQR] 3-12) at PPC referral. Median hospital length of stay was 11 days (IQR 4-35), and median days to referral was 2 (IQR 1-8). Patients referred for PPC had been diagnosed mainly with cancer (29%), congenital/chromosomal (14%), or neurologic (12%) illnesses and were referred from hematology-oncology (29%) and critical care (23%) units. Top reasons for referral were patient/family support (78%), goals of care/advance care planning (42%), and symptom management (non-pain 34.0%; pain 21.5%). Most PPC consultations were interdisciplinary, with 78% of patients seeing >1 type of clinician. Mean days on PPC service was 7.0 (IQR 2-22). Mean number of family meetings was 1.2 (SD 2.0, range: 0-20). Most patients were discharged alive (88%) with one or more services (54% nursing, 15% hospice).


      Children referred for inpatient PPC were commonly diagnosed with cancer, seen early in the hospitalization, and discharged alive. PPC teams were consulted to provide all aspects of palliative care, and most consults were interdisciplinary.

      Implications for Research, Policy, or Practice

      PedPCQN data help establish benchmarks for PPC referral practices. This in turn enables PPC teams to identify staffing and resource needs, quality improvement priorities, and regulatory reporting options. Modifications are under way for inclusion in the new Palliative Care Quality Collaborative, offering continued opportunities to evaluate and improve PPC.