Pediatric Palliative Care: Where Are We Now?

Tina M. Schwartz; Stephanie Chalupka


Pediatr Nurs. 2019;45(5):224-230. 

In This Article

Components of a Pediatric Palliative Care Program

Palliative care in the United States has evolved from a singular focus on persons at the end of life, for which care was solely directed on comfort, to a more broad-based interprofessional specialty that addresses the needs of all seriously ill persons and their families. Although no national standard in the United States exists, care has improved under the Affordable Care Act (Morrison, 2013). In the United States and Canada, several organizations have provided guidelines and written recommendations for health care providers and hospitals to improve the care provided to pediatric patients and their families receiving palliative care. Also included are guidelines for when to initiate palliative care services and diagnoses that would automatically trigger a palliative care consult. Figure 1 lists examples of key diagnoses identified by the Center to Advance Palliative Care that would initiate the offering of PPC services.

Figure 1.

CAPC Diagnoses That Can Trigger a Pediatric Palliative Care Referral
Notes: These are some examples. More are available at the CAPC website. BPD = bronchopulmonary dysplasia, CF = cystic fibrosis, IVH = intraventricular hemorrhage, NAT = neonatal alloimmune thrombocytopenia, PVL = periventricular leukomalacia.
Source: Reprinted from Pelant, McCaffrey, & Beckel, 2012, p. 395. Reprinted with permission from Elsevier.

In a qualitative meta-summary, palliative care components most important to patients and parents were communication with staff, accessibility to care, psychosocial needs, spiritual and cultural needs, pain and symptom management, specialist care, needs of siblings, and decision-making (Stevenson, Achille, & Lugasi, 2013). To create a high-quality PPC program, the needs of patients and families must be reviewed carefully and taken into consideration (Stevenson et al., 2013). Families report that a good palliative care program aids in improving their loved one's QOL by providing appropriate symptom management through out the illness. They consider honesty, accessibility to staff, open communication, and coordination of care essential aspects of PPC (Crozier & Hancock, 2012).

Concepts Abroad

In the United Kingdom, core components of PPC have been categorized and set as national standards (Bradford et al., 2014). The core concepts as drafted in 2013 consist of referral to a PPC team upon diagnosis, thereby establishing an immediate rapport between the family and the health care team. Another core component is a structured consultation by the PPC team, which includes a full history, physical examination, review of diagnostics, confirmation of diagnosis, and establishment of a plan of treatment (Bradford et al., 2014). The remaining core components consist of providing the family with psychosocial support, including the well-being of all family members, spiritual or religious support and coordination of care across all settings (Bradford et al., 2014). The coordination of care encompasses collaboration of health care teams and providers for treatment options, advanced planning, and end-of-life care (Bradford et al., 2014).

In an integrative review, Australian re searchers defined the elements of optimal PPC, which were very similar to those in the study performed in the United States and Canada (Virdun et al., 2014). Researchers reviewed 11 qualitative, quantitative, and mixed method studies. The review found that Australian patients and families require access to psychosocial support, pediatric specialist support, and sibling support. They further indicated a need for flexibility in the location of care, with most identifying a preference for care to be in the home setting whenever possible and respite care (Virdun et al., 2014). For respite care to be optimal, staff were required to understand the child's care needs prior to any period of respite, and that respite is only successful if the family trusts their child's respite provider (Virdun et al., 2014.)