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 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 utilized 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, on-going therapy at time of treatment withdrawal or withholding, pharmacologic and non-pharmacologic 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, was 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.
Principal Results
Importantly, 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 non-pharmacologic interventions utilized at the EOL was also lacking.