What Do We Know About Pediatric Palliative Care Patients Consulting to the Pediatric Emergency Department?

Abstract

The objective of this study was to describe the characteristics of pediatric palliative care (PPC) patients presenting to a pediatric emergency department (ED) and these patients' ED visits. This retrospective chart review was conducted from April 1, 2007, to March 31, 2012, in a tertiary care pediatric university-affiliated hospital. Eligible patients had initial PPC consultations during the study period; all ED visits by these patients were included. Data were drawn from the ED's electronic data system and patient's medical chart. A total of 290 new patients were followed by the PPC team, and 94 (32.4%) consulted the ED. Pediatric palliative care patients who consulted the ED had a median age of 7 years and baseline diagnoses of cancer (39.4%) or encephalopathy (27.7%). No patients died in the ED, but 36 (38.3%) died in hospital after an ED visit and 18 (19.1%) within 72 hours of admission. Pediatric palliative care patients consulted 219 times, with a median number of visits per patient of 2 (range, 1-8). They presented acutely ill as per triage scales. Reasons for consultation included respiratory distress/dyspnea (30.6%), pain (12.8%), seizure (11.4%), and fever (9.1%). Patients were often admitted to wards (61.2%) and the pediatric intensive care unit (7.3%). Two thirds (65.7%) of patients had signed an advanced care directive at the time of their visit. Discussions about goals of care occurred in 37.4% of visits. Pediatric palliative care patients present to the ED acutely ill, often at their end of life, and goals of care are not always discussed. This is a first step toward understanding how to improve PPC patients' ED care.