Pediatric Palliative Care: Where Are We Now?

Tina M. Schwartz; Stephanie Chalupka


Pediatr Nurs. 2019;45(5):224-230. 

In This Article

Barriers to Implementation of Pediatric Palliative Care

No child or family should have to endure a life-limiting illness without a team of providers who specialize in PPC. As previously noted, many national organizations and agencies have published policy statements, guidelines, and recommendations that indicate that palliative care should be integrated with curative care and offered to patients with a variety of diagnoses (AAP, 2013; National Hospice and Palliative Care Organization, 2009). Unfortunately, we must address implementation barriers for PPC to effect change.

The literature has identified several barriers, with the most common barrier being uncertainty in patient prognosis and lifespan (De Clerq et al., 2017; Miller et al., 2015; Verberne et al., 2018; Williams-Reade et al., 2013). Other barriers to implementation include the uncertainty of treatment outcomes and the denial of family or clinicians to accept the possibility of the child's death. Further, a lack of continuity or coordination of care, language barriers, and time limitations (meaning the child never receives services or services are not received promptly) are obstacles that must be overcome (DeClerq et al., 2014; Miller et al., 2015; Verberne et al., 2018; Williams-Reade et al., 2013).

Another obstacle regards the meaning of palliative care. The term palliative care is often confused with and used interchangeably with hospice care. How patients and family members perceive palliative care may cause anxiety and fear. The patient and family may feel their providers have abandoned all hope of curative treatment, and have given up on their loved one (DeClerq et al., 2014; Williams-Reade et al., 2013). PPC is further complicated because many communities do not have resources in place to provide care to patients and families outside of a hospital setting (Williams-Reade et al., 2013).

There are also important operational and financial factors that must not be overlooked that cause the implementation of quality palliative care to be challenging. Coordination of care between team members might be lacking. This is a compelling piece to bridging quality care with family support (Miller et al., 2015; Williams-Reade et al., 2013). Many times, meager or absent financial reimbursement or eligibility criteria from insurers leaves the family with a very significant financial burden for the care provided.