Medical Record Documentation and Symptom Management at the End of Life in the NICU

Abstract

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.

Neonatal End-of-Life Symptom Management

“…Lack of education, resources, and consistency in the approach to EOL care contributed to overall provider discomfort. In addition, providers may be focused on other tasks such as supporting the family which lend to subtle physical signs going unnoticed (8).…”

“…These challenges, along with historically limited documentation, makes it difficult to draw conclusions or to come to a consensus about standardized approaches to symptom assessment in neonates. One study of 20 neonates with planned redirections of care described the documentation of symptoms exhibited and the treatment of those symptoms during the dying process (8). The authors noted that all patient documentation had missing data related to EOL care and that there was a varying amount of detail with regard to the infant's symptoms and use of medications.…”

“…Parents note that when goals have transitioned to end-oflife care, they worry that their child will experience pain and physical suffering. They hope for a peaceful death with minimal discomfort for their child (2)(3)(4)(5)(6)(7)(8). One of the focuses of palliative care is the prevention and alleviation of symptoms including physical, emotional, and perceived suffering of the patient (9).…”

“…For clinicians as well as families this is a time of uncertainty. It is often difficult to predict the timing of death, whether it be hours, minutes, days, or more (8). Effective management requires anticipation of the disease manifestations as well as the severity of symptoms for each patient.…”

Multicentre emergency department study found that paracetamol and ibuprofen were inappropriately used in 83% and 63% of paediatric cases

“…Despite the continuous development and greater awareness of instruments, guidelines and educational and training strategies, healthcare professionals still do not pay enough attention to pain in the ED and numerous studies have documented the inadequate treatment of pain in this setting, particularly in children. In fact, the literature confirms inadequate evaluation, measurement and treatment of pain in patients of all age groups and in different situations .…”