The Have and Have Nots: Characteristics of Hospitals With a Pediatric Palliative Care Program

Pediatric palliative care (PPC) is a board-certified subspecialty¹  that provides expert medical management to patients with serious illness. PPC improves pain and nonpain symptoms,^2,3  optimizes communication and goal concordant care,^4,5  and improves patients’ quality of life.⁶  Still, PPC programs are neither ubiquitous nor uniformly staffed throughout the United States.

In this issue of Pediatrics, Weaver et al⁷  highlights characteristics of hospitals with a pediatric palliative care program. Past studies have investigated PPC program prevalence, team composition, and services offered; however, these studies have relied on self-reporting.^8,9  This study is novel because it used The Children’s Hospital Association Annual Benchmark Report to examine PPC program prevalence and the characteristics of hospitals supporting these programs. As such, we now understand that an unacceptable 20% of pediatric hospitals lack a PPC program.

This finding could be perceived as the study’s primary takeaway. Yet, its real impact is its elucidation of differences between hospitals that do and do not support a PPC program. Weaver et al grouped characteristics into operational, missional, educational, and financial categories to give the results structure. They found that larger hospitals with higher acuity are more likely to have PPC programs. Hospitals with pediatric-friendly home hospices and/or respite care in their community are more likely to have a PPC program. Results also highlight that hospitals with Joint Commission accreditation or Magnet Nursing Designation, Accreditation Council for Graduate Medical Education training programs, or an Accountable Care Organization are statistically more likely to have a PPC program.

This constellation of hospital characteristics suggests that they and their communities have the financial health to optimize all aspects of pediatric health care. Hospital size, visit volumes, patient acuity, and possessing an Accountable Care Organization are all drivers of financial health. Additionally, these hospitals can and do support the costly endeavor of staffing, training, and maintaining Magnet Nursing Designation, Joint Commission accreditation, and Accreditation Council for Graduate Medical Education training programs. They also support a PPC program, which typically cannot cover its operational costs, let alone generate revenue because of how reimbursement structures currently exist. PPC program existence and growth require operational and philanthropic financial support.

Hospital financial health may also be a substantial factor why 20% of pediatric hospitals do not have a PPC program. PPC has now been a valuable subspecialty for decades. It is not novel nor is it limited only to end-of-life care and thus of limited utility. These traditional reasons for the lack of a PPC program are no longer relevant. Rather, this study provides data supporting the belief that finances now determine the presence and likely growth of a PPC program within a hospital.

This study’s true “pearl” is the unveiling of this disparity. Moreover, without national metrics or other incentives, hospitals lack the motivation and likely will not have or grow PPC programs unless new motivations or mandates emerge. This study is a call to action for all pediatricians to join PPC providers who have long advocated for change. We need state and national PPC payment models to ensure all hospitals can afford programming. We also need national requirements on the presence and staffing requirements of PPC within hospitals to give health systems a reason to accept the costs of supporting a PPC program. Only then will the thousands of children in need of PPC have access to it.¹⁰ 

PPC

pediatric palliative care