Pediatric Palliative Care: Where Are We Now?

Tina M. Schwartz; Stephanie Chalupka


Pediatr Nurs. 2019;45(5):224-230. 

In This Article

Best Practice

The American Academy of Pediatrics (AAP) (2013) policy statement provides guidelines and recommendations for quality PPC. The policy statement recognized the field of PPC was an emerging field of practice requiring health care providers to have knowledge and expertise in the care they were providing to patients with life-limiting illnesses and their families (AAP, 2013). The core commitments as recommended by the AAP serve as the foundational model of pediatric palliative care:

  • Patient and family-centered care.

  • Respect and partnering with the patient and family.

  • Access for all to quality palliative care services.

  • Continuum of care across the age spectrum and life span of the child.

  • Physician preparedness and collaboration.

  • Continued improvement in the quality of care and research.

The AAP defined guidelines and recommendations are based upon research, expert opinion, and consensus statements. All hospitals and healthcare organizations that provide care to children with life-threatening or life-limiting illnesses should have specialist palliative care teams. There should be collaborative relationships between health care facilities within the same geographical areas to maintain competency, and these facilities should follow National Hospice and Palliative Care Organization's standards of practice for PPC (AAP, 2013). The care provided should be collaborative, multi-modal care, which includes cure-seeking and life-prolonging if determined to be in the child's best interest. The care should also enrich the quality of life and provide patients and families with psychosocial, social, and spiritual support (AAP, 2013; National Hospice and Palliative Care Organization, 2009).

Patient safety is of the utmost importance at all times. Any patients with complicated pain or symptoms should have a specialty consultation that includes a thorough review of the child's diagnosis. The palliative care specialist should evaluate and communicate with the family regarding the child's prognosis and possible future symptoms, impairments, and even mortality (AAP, 2013). The family, including siblings, should receive support throughout the disease trajectory. The family should be encouraged to carry out cultural or spiritual rituals, and support should continue through the bereavement stage. PPC specialists should undergo training and be able and willing to provide pain and symptom management to patients for whom they provide care (AAP, 2013).

The European Association for Palliative Care (EAPC) white paper delineated the core competencies required to work in PPC. The EAPC noted that to meet the needs of patients and families, all healthcare providers must be adequately trained to provide the highest standards of care (Downing, Ling, Benini, Payne, & Papadatou, 2014). The EAPC further indicated that "Education is essential for the development of palliative care, and thus a key component of the [World Health Organization] public health strategy for palliative care development" (Downing et al., 2014, p. 245).

As PPC has developed over the years, many organizations and countries have different definitions of what PPC is. The definition adopted by the EAPC is closely linked to that of the World Health Organization and states, in part, "Palliative care…is an active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through to death and beyond" (Downing et al., 2014, p. 245).

Under the recommendations and guidelines developed by the EAPC, practitioners trained in PPC should be able to demonstrate and apply core competencies in their daily practice. Among their deliverables should be the ability to enhance physical comfort throughout the disease trajectory, including the end of life. Clinicians should also possess the skills to assess the needs of the family, respond to ethical challenges in clinical decision-making, and facilitate communication at all times. They should also be able to inform patients and parents of changes in prognosis, and the capacity to break bad news and respond to grieving parents and siblings (Downing et al., 2014). The embodiment of quality PPC is the commitment and promise to care for all children with life-threatening or life-limiting illnesses and their families by ensuring health care providers have the appropriate training and resources to do so (Downing et al., 2014).