Pediatric Palliative Care: Where Are We Now?

Tina M. Schwartz; Stephanie Chalupka


Pediatr Nurs. 2019;45(5):224-230. 

In This Article

Literature Review

Review of the literature reveals that although progress has been made to implement PPC programs, there is still much work to be done. In 2012, 226 hospitals were surveyed in the United States, with 162 hospitals providing data relating to their PPC programs (Feudtner et al., 2013). Of the hospitals who responded (n = 162), 69% reported having a PPC program. These programs typically only provided services on an inpatient basis and only during weekdays. Despite programs becoming more common, many respondents indicated they are dependent on hospital funding for staffing (Feudtner et al., 2013). It was also noted in this survey that the proliferation of adult programs had been tracked much more closely than had pediatric programs, with the number of adult programs doubling in the past decade.

Although many hospitals have PPC programs, the literature demonstrates a lack of education among health care providers to deliver appropriate palliative care services to patients and families (Price et al., 2017; Stayer, 2012; Wu, Friderici, & Goff, 2013). Pediatric nurses spend significant amounts of time providing care to children with complex medical needs and life-limiting illnesses (Stayer, 2012). These nurses are uniquely positioned to assess and meet the needs of both the child and the family. They are present during complex medical procedures that may extend the life of the child (Stayer, 2012). However, nurses surveyed by Price and colleagues (2017) indicated they do not have the opportunity to be prepared educationally to meet a standard of care for PPC, which includes comfort, enhancing quality of life, decreasing suffering, effective communication, and providing opportunities for personal, developmental, and spiritual growth (Ferrell, Mallow, Mazanec, & Virani, 2016; National Hospice and Palliative Care Organization, 2009; Stayer, 2012).

A study of nursing staff also raised concerns relating to palliative and end-of-life education needs of nurses. Acute care nursing staff responses indicated that while they felt competent with patient and family support and symptom management, more educational tools were needed to assist patients and families with decision-making and improving communication between the interprofessional team and family (Price et al., 2017). Upon completion of this study, nursing leadership identified areas for program development specific to their units palliative and end of life care needs. In this particular organization, the PPC team implemented 4-hour interprofessional workshops focusing on patient and family communication strategies and role clarification (Price et al., 2017).

Similarly, pediatric residents' experiences and comfort levels with PPC suggest that less than 40% of pediatric residents felt "comfortable" providing this type of specialized care (Wu et al., 2013). One factor might be limited training during their residency. Approximately one-third of residents indicated they were unsure of the definition of palliative care (Wu et al., 2013). This study further suggested that pediatric residents might not fully understand the goals of PPC and will leave their residency without full knowledge of these goals or confidence in their skills. Residents who worked at hospitals who had palliative care teams in place reported their knowledge of palliative care was broader. However, all residents were able to utilize appropriate specialty palliative care consults if a family required the same and if these services were available (Wu et al., 2013).

In viewing palliative care in the realm of child and adolescent mortality, unintentional injuries, suicide, and homicides are leading causes of death and are occurring at increasingly alarming rates (Kochanek et al., 2019). Data provided support the need to bridge public health initiatives and advocacy with palliative care (Leyenaar & Bogetz, 2018). This study suggests there are essential health disparities in PPC. A disproportionately larger number of African-American children died after a code event than their white counterparts by almost a 3:1 ratio (Leyenaar & Bogetz, 2018). This raises a significant public health question relating to the differences in end-of-life care in hospitals. In a similar but earlier study, patients dying in a children's hospital were likely to receive opioid sedatives in their last days of life as part of their pain management. However, the troubling finding was that African-American children were approximately 20% less likely than white children to receive the same pain management regimen during their last days of life (Ragsdale et al., 2015). As health care providers, this leaves us with reason to reflect upon potential biases and disparities among minority populations and to ensure optimal palliative care for all children.

Moreover, it was found that PPC consultations were received mainly by patients on oncology units and non-ICU wards (Leyenaar & Bogetz, 2018; Trowbridge, Walter, McConathey, Morrison, & Feudtner, 2018). Consultations within the emergency department, the operating room, and neonatal intensive care units were less than 30% (Leyenaar & Bogetz, 2018; Trow bridge et al., 2018). Given that child mortality in the United States remains higher than a vast majority of other industrialized nations, this provides us an opportunity to bridge the gap by emphasizing that palliative care consultations allow health care providers to meet the needs of children, adolescents, and young adults who die in the United States (Leyenaar & Bogetz, 2018).

There appears to be a shift in the investigation of the processes of PPC (symptom management and psychosocial care) to an assessment of the outcomes of pediatric palliative care (Liben, Langner, & Bluebond-Langner, 2014). In changing the way we review PPC and its delivery to patients and families, we are now able to recognize its importance more clearly. This shift from process to outcomes is a move toward accountability and quality improvements (Liben et al., 2014).