INTRODUCTION:
Approximately 16,000 children are diagnosed with cancer in the United States annually and 20% die of their disease.1 Many pediatric oncology patients experience suboptimal management of physical and psychosocial symptoms and families receive insufficient communication and support during their child’s illness and following their child’s death.2-5 Research suggests these inadequacies could be addressed by early involvement of pediatric palliative care (PPC).6-8
The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing life-threatening illness by preventing and relieving suffering through the early identification, assessment and treatment of pain and other problems, including physical, psychosocial, and spiritual problems.9 The WHO, the National Academies of Science (formerly the Institute of Medicine), and the American Academy of Pediatrics (AAP) have called for earlier integration of palliative care.10-12 Provision of PPC for children with cancer results in improved pain and symptom management, better psychosocial support and care coordination, fewer deaths in the intensive care unit, and increased overall patient and family quality of life.7,13-15
The United States News and World Report (USNWR) rankings has benchmarked that 75% of patients with refractory cancer should receive a palliative care consult more than 30 days prior to death.16 Access to palliative care services in children’s hospitals is increasing.17 Yet many children with cancer do not receive palliative care services, and early integration of services is rare.11,18,1920The barriers to integration of palliative care services in the care of pediatric oncology patients span several socio-ecological domains. In addition to inconsistent and inadequate financing for provision of PPC services and the nationwide shortage of providers with expertise in delivering PPC, there are unique barriers to integration of PPC with pediatric oncology care arising at the provider, patient, and family levels.7,11,17,20Pediatric oncology providers may believe palliative care cannot be delivered concurrently with curative cancer treatments.21,22Pediatric oncology providers may view palliative care as synonymous with hospice or end-of-life care and may avoid conversations about death and dying with patients and families to avoid disrupting the “culture of hope” they attempt to foster.7,23Families may have similar misconceptions about palliative care, perceiving it as a distinct phase in their child’s treatment implemented when curative options have been exhausted.7,24,25Additionally, despite a recent study showing that the oncology providers’ understanding of the role of PPC is expanding from end-of-life care only to the more holistic WHO definition of palliative care, and a recent study showing that most families were open to integrating PPC early in the course of cancer treatment, pediatric oncology providers may not involve a PPC team as they perceive overlap between services provided by both teams.21,26-28
At our institution, no formal guidelines or policies existed within the oncology department with regards to PPC involvement. The decision to involve PPC was made at the discretion of primary oncology teams where some patients, even those with poor prognoses, never received PPC involvement. In 2017 and 2018 our institution reported to USNWR that PPC involvement more than 30 days prior to death in pediatric oncology patients with refractory cancer occurred in 62% and 69% of patients respectively which is less than the USWNR benchmark of 75%. The global aim of our quality improvement project was to increase timely involvement of PPC in oncology patients. Our specific aim was to increase days between PPC consult and death for patients with refractory cancer from a baseline median of 13.5 days to ≥30 days between March 6, 2019 to March 5, 2020.