Pediatric Palliative Care Programs in US Hospitals

Abstract

BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country. METHODS:The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States.RESULTS: Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%). CONCLUSIONS:There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.

Five years of experience in providing paediatric palliative care in hospital setting

“…Dětská paliativní péče v nemocnicích zažívá v 21. století intenzivní rozvoj. (1)(2)(3) Nemocniční paliativní programy jsou v zahraničí standardem, odborná úroveň péče nabízená paliativními týmy se však v jednotlivých nemocnicích USA a Evropy velice liší. (3,4) Práce nemocničních týmů zahrnuje krom klinické praxe také aktivity, přičemž výzkum v oblasti paliativní péče patří mezi nejdynamičtěji se rozvíjející oblasti paliativní medicíny.…”

End-of-Life Care in Patients with Cancer 16–24 Years of Age

“…Patients receiving palliative care are not required to stop the active treatment designed to cure a serious illness. Palliative care is increasingly becoming the standard of practice in caring for those living with serious illnesses [7,8], but access to this valuable service is limited in many countries [9]. Incorporation of palliative care approaches involves specific approaches to elicit goals of care from patients and their families, documentation of these goals in medical records, and planning clinical care and symptom control accordingly [10 •].…”

Home-Based Care for Children with Serious Illness: Ecological Framework and Research Implications

“…The total number of PPC organizations and providers across the U.S. caring for children at home is unknown, although only approximately 30% of hospital-based PPC programs in the U.S. offer home visitation services [ 104 , 105 ]. Few studies have systematically evaluated outcomes from these programs, outside of a handful of single-institution program evaluations, which observed improved child quality of life [ 33 , 37 ]; decreased family stress [ 31 ]; improved parental quality of life [ 30 ]; improved family satisfaction with care [ 36 , 106 ]; improved concordance between the preferred and actual location of death [ 33 , 34 , 106 ]; and reduced hospital utilization and costs [ 30 , 107 ].…”