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.