Pediatric Palliative Care: Where Are We Now?

Tina M. Schwartz; Stephanie Chalupka


Pediatr Nurs. 2019;45(5):224-230. 

In This Article

What Is Pediatric Palliative Care? What It Should be

There are many different answers as to what encompasses PPC. There is no simple answer, and there is no national standard. Palliative care has evolved over the last 15 years, resulting in significant growth in PPC programs in children's hospitals (Feudtner et al. 2013; Institute of Medicine, 2014; Miller, Levy, Linebarger, Klick, & Carter, 2015). Much confusion remains about the meaning of palliative care and its distinct differences from both hospice and end-of-life care. Unfortunately, most individuals (both medical and non-medical) indicate that palliative care is administered at the end of life only after all curative treatments have been exhausted. This could not be further from the true meaning of palliative care. The fundamental goals of PPC as found within the literature include the following: communication and psychosocial support, pain and symptom management, end-of-life care, and bereavement care (Miller et al., 2015).

There appears to be much disagreement among practitioners and clinicians relating to palliative care. O'Shea and Kanarek (2013) found that many health care providers are unsure of how to deliver bad news, such as a new cancer diagnosis, and are concerned about the implications of the message they would be sending if palliative care is discussed at diagnosis. Early discussion of palliative care might imply they were giving up on their patients, thereby depriving the patient and family of any hope they might hold for a positive outcome.

In 2001, experts in PPC, which included the American Academy of Pediatrics (AAP), the Children's International Project on Palliative/Hospice Services (ChIPPS), and the National Hospice and Palliative Care Organization, issued a white paper with recommendations to improve care of children living with life-limiting illnesses (O'Shea & Kanarek, 2013). In 2009, the National Hospice and Palliative Care Organization, along with ChIPPS, provided a Standard of Practice for Pediatric Palliative Care and Hospice. The standards of PPC indicate that such care should be individualized for children with life-threatening conditions. The care should focus on enhancing the QOL for the child and family, and prevent suffering, minimize pain and discomfort, and provide opportunities for growth spiritually, developmentally, and personally. All therapy provided may be curative and life-prolonging (National Hospice and Palliative Care Organization, 2009).

As previously mentioned, there is debate as to when to initiate palliative care. According to the standards established by National Hospice and Palliative Care Organization, discussion regarding palliative care should be at the time of diagnosis and continue through the end of life. Care should continue after the death of the child and be consistent to provide the family with follow-up bereavement counseling (National Hospice and Palliative Care Organization, 2009; O'Shea & Kanarek, 2013).