Initiating palliative care services in the outpatient primary care setting is logistically challenging but increases access to palliative care for children with complex chronic medical conditions and improves palliative care knowledge and comfort for PCPs.

WHAT'S KNOWN ON THIS SUBJECT: As the number of chronically ill children grows in the United States, end-of-life discussions and advance directives (AD) will become increasingly important. Although pediatric palliative care is gaining interest, little is known about parental preferences regarding ADs for chronically ill children. WHAT THIS STUDY ADDS:Knowledge about ADs is limited among caregivers of children who have chronic illness. However, interest in creating ADs is high, suggesting an unmet need and opportunity for health care providers to improve the care of children who have chronic illness. abstract OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS:We conducted a prospective, cross-sectional survey of parents and caregivers of children who have chronic illness. During ambulatory medical visits, participants were asked about previous AD experience and knowledge, future preferences regarding AD discussions, their child' s past and current health status, and family demographics.RESULTS: Among 307 participants surveyed, previous AD experience was low, with 117 (38.1%) having heard of an AD, 54 (17.6%) having discussed one, and 77 (25.1%) having known someone who had an AD. Furthermore, 27 (8.8%) participants had an AD or living will of their own, and 8 (2.6%) reported that their chronically ill child had an AD. Previous AD knowledge was significantly more likely among parents and caregivers who had a college degree than those who did not have a high school diploma, yet significantly less likely among primarily Spanish-speaking parents and caregivers than those primarily English-speaking. Interest in creating an AD for the child was reported by 151 (49.2%) participants, and was significantly more likely among families who had more frequent emergency department visits over the previous year. CONCLUSIONS:The limited AD experience and knowledge of parents and caregivers of children who have chronic illness and their interest in creating an AD suggest an unmet need among families of children who have chronic illness, and an opportunity to enhance communication between families and medical teams regarding ADs and end-of-life care. Pediatrics 2014;134:e436-e443 AUTHORS:

WW for AOM management is cost-effective. Implementing WW may improve outcomes and reduce health care expenditures.