Pediatric Palliative Care Programs in Children’s Hospitals: A Cross-Sectional National Survey

Abstract

BACKGROUND: Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children’s hospitals, but little is known about their number, staff composition, services offered, sources of support, or national distribution. METHODS: In the summer of 2012, we surveyed 226 hospitals as identified by the National Association of Children’s Hospitals and Related Institutions. The survey instrument gathered data about whether their institution had a PPC program, and for hospitals with programs, it asked for a wide range of information including staffing, patient age range, services provided, and financial support. RESULTS: Of the 162 hospitals that provided data (71.7% response rate), 69% reported having a PPC program. The rate of new program creation peaked in 2008, with 12 new programs created that year, and 10 new programs in 2011. Most programs offer only inpatient services, and most only during the work week. The number of consults per year varied substantially across programs, and was positively associated with hospital bed size and number of funded staff members. PPC programs report a high level of dependence on hospital funding. CONCLUSIONS: PPC programs are becoming common in children’s hospitals throughout the United States yet with marked variation in how these programs are staffed, the level of funding for staff effort to provide PPC, and the number of consultations performed annually. Guidelines for PPC team composition, funding, and consultation standards may be warranted to ensure the highest quality of PPC.

Pediatric Palliative Care and Inpatient Hospital Costs: A Longitudinal Cohort Study

“…These patients were followed up for 2 subsequent years to examine the association between PPC and inpatient cost over time. Patients were grouped into 3 distinct categories reflecting the various types of patients cared for by PPC: (1) patients who died during or very close to their terminal hospitalization; (2) patients who died during the follow-up period; and (3) patients who survived the follow-up period.…”

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

“…5 PPC can be delivered in various settings, including community, hospitals, hospice, and at home. [6][7][8][9][10][11][12][13][14] In the United Kingdom, where the modern pediatric hospicepalliative care movement began with the founding of Helen House in 1982, 15 the freestanding hospice approach has been commonly employed. Other countries, including the United States, typically emphasize hospital inpatient consultation and home-hospice care.…”

“…Other countries, including the United States, typically emphasize hospital inpatient consultation and home-hospice care. 6 Canada has adopted a blended model, with both hospital-community programs and separate "freestanding" inpatient programs that provide respite, symptom management, and end-of-life (EOL) care. 16 Currently, 6 freestanding hospices in Canada are in operation.…”

Developing Competencies for Pediatric Hospice and Palliative Medicine

“…Almost 50% of all pediatric hospitals have a pediatric HPM program, with most established within the past 10 years. 7 In 2008, only 3 institutions and 3 positions were available for specialized training in pediatric HPM. As of June 2014, 15 institutions with 20 positions are available for pediatric focused training.…”