Medical record documentation and symptom management at the end of life in the NICU.

PURPOSE

In neonates, the course of illness is often unpredictable and symptom assessment is difficult. This is even truer at the end of life (EOL). Time to death can take minutes to days, and ongoing management of the infant is needed during the time between discontinuation of life-sustaining treatment and death to ensure that the infant remains free of pain and suffering. The symptoms experienced by neonates as they die, as well as best ways to treat those symptoms, are understudied. The purpose of this study was to examine symptoms exhibited by neonates at the EOL and the treatments used to manage those symptoms as documented in the medical record during the last 24 hours of life.

SUBJECTS

The sample included 20 neonates who died at a large children's hospital.

DESIGN

This was an exploratory, descriptive study.

METHODS

Descriptive data, such as diagnosis, ongoing therapy at time of treatment withdrawal or withholding, pharmacologic and nonpharmacologic interventions associated with treatment withdrawal, time of treatment withdrawal and death, age at time of death, signs and symptoms exhibited during EOL care, and pain scores, were abstracted from the infant's medical record.

MAIN OUTCOME MEASURES

Inadequate documentation in the medical record resulted in missing data that made it not possible to fully explore aspects of symptom management during the last 24 hours of life; however, some important results were found.

RESULTS

This study showed a difference in the way neonates approach the EOL period. Other findings were that most infants in the study received pain medication, even though pain scores were infrequently documented and drug dosages varied across infants. Finally, documentation of nonpharmacologic interventions utilized at the EOL was also lacking.