Comfort Care Principles for the High-risk Newborn

Objectives

After completing this article, readers should be able to:

1. Apply palliative care principles in neonatal intensive care.

2. List the professionals who should be involved with palliative care programs.

3. Describe the focus of palliative care.

4. Describe the critical components of palliative care.

Introduction

The neonatal intensive care unit (NICU) remains one of the most sophisticated and technical environments in which children are treated. Medical, nursing, respiratory, and surgical care routinely are intensive, invasive, and at times aggressive as lifesaving interventions are provided to the most vulnerable of pediatric patients. Do comfort or palliative care measures have a place in the NICU? If so, for whom, and in what particular circumstances? This article addresses the important concept of comfort care for certain groups of newborns, the ethical principles underlying decisions for such care, and the appropriate family-centered provision of comprehensive palliative care in the NICU.

Background

Applying hospice (palliative care) concepts to the newborn initially was described in the United States in 1982. Clinicians in the NICU can endeavor to create an environment in which the highly technical care required for lifesaving or life-prolonging treatments and the “high touch” care of comfort-oriented, patient-centered, and family-friendly care can coexist and complement one another. Most NICUs are competent in caring for infants who die, but there are wide variations in the care measures provided for hopelessly ill newborns, and opportunities abound for improving the provision of comprehensive palliative care for dying newborns. Such care should include pain and symptomatic management, psychosocial support for family members, spiritual support for family members, and attention to the newborn’s quality of life and best interests as determined through a culturally sensitive, negotiated, family-centered approach (Figure ⇓). When such measures are the focus of care, everyone in the NICU stands to benefit, including the newborn patient, his or her family, and …