Primary palliative care in the neonatal intensive care setting: What is possible? what is necessary?

Abstract

Objectives * Reflect on current neonatal intensive care practice for the seriously ill and or dying neonate. * Explore the role of the primary palliative care clinician. * Discuss palliative educational goals for intensive care clinicians. Introduction: This session will be an interactive discussion with presenters (parent, palliative care nurse scientist/ educator/author/neonatologist/palliative care pediatric nurse consultant). Our assumption is that primary palliative care is integral to the life-supporting care of neonates and their families on admission to the neonatal intensive care unit (NICU). Background: In keeping with the recommendations of the 2014 Institute of Medicine’s Dying in America report, primary palliative care must be included in the basic curriculum for every clinician who cares for patients with advanced or serious illness. Clinicians practicing in the NICU fall squarely in this category as demonstrated by the life-supporting measures required by sick newborns while addressing the vulnerable traumatized emotional state of parents, especially mothers. Few parents are able to grasp the enormity of the situations they are now facing. Two-thirds of infant deaths (birth-1 year) occur in the neonatal period (birth-28 days). Other neonates remain with a significant degree of prognostic uncertainty, hovering between life and death for weeks or months. If an infant dies, parents are often unprepared and, in turn, the intensive care team is unprepared to respond to the intense suffering of parents. Facilitated discussion: (Questions for discussion will be addressed as time allows.) * What is the role of a primary palliative care clinician practicing in an intensive care setting? * Are there core primary palliative care educational outcomes that are specific to any intensive care settings? * Is the implementation of a primary palliative curriculum a possibility in the current intensive care environment? Summary: Session facilitators will summarize the discussion points and share with attendees via e-mail if requested.