Study highlights variability in pediatric palliative care programs across the United States

1. Pediatric palliative care programs differed in regard to staffing, team composition, and services provided to patients, with many programs not meeting current practice guidelines for standard of care.

2. There were high rates of concern (63%) for clinician burnout amongst survey respondents.

Evidence Rating Level: 3 (Average)

Study Rundown: Pediatric palliative care involves a multidisciplinary team of clinicians trained to provide optimal care for children with serious illnesses. Over the past two decades, the number of pediatric palliative care programs has significantly increased across the United States. Although there are numerous practice guidelines and recommendations, previous studies have indicated significant variation in these programs, due to factors such as financial and cultural challenges. This study sought to describe characteristics of inpatient pediatric palliative care programs. There were important differences across programs with regards to team composition, staffing, and services provided to patients, with many programs not meeting recommended practice guidelines for 24/7 availability. There were additionally notably high rates of reported burnout amongst respondents. Although somewhat limited by the retrospective, self-report design, this study provides an important description of pediatric palliative care program discrepancies across the United States and specific areas for improvement to standardize clinical practice.

Click to read the study in PEDIATRICS

Relevant Reading: The impact of the coronavirus pandemic on pediatric palliative care team structures, services, and care delivery

In-Depth [survey]: In total, 54 inpatient pediatric palliative care programs, representing 29 states and the District of Columbia in the United States, submitted data through the 2018 National Palliative Care Registry. The majority of programs were not for profit (89%), urban (83%), teaching hospitals (100%), and available for a variety of consultations within the hospital (85%). Hospitals varied in size (range of 75-700 beds), and 46% provided 24/7 coverage. Staffing was variable, with a median of 3.8 full-time staff per 10,000 hospital admissions. Only 37% of programs met recommendations for team composition. Almost two-thirds (63%) of individuals reported feeling moderately or extremely concerned about burnout, with 60% reporting issues with adequate staffing. The majority of programs were reliant on hospital funding (98%), in addition to billing revenue (74%), and grants and philanthropy (72%).

Image: PD

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