Study: Stopping life-sustaining therapy is top cause of death in NICU
The primary mode of death at a regional referral neonatal intensive care unit (NICU) was withdrawal of life-sustaining treatment, according to a 10-year single-center study assessing the use of cardiopulmonary resuscitation (CPR) at the time of death, published in the July issue of the Archives of Pediatrics & Adolescent Medicine.
There were 7,240 admissions to the NICU at Children’s Mercy Hospital from 1999 through 2008, according to the study. During the same time period, there were 417 infant deaths, three of which were excluded from the study due to atypical NICU admissions. Of the 414 infant deaths studied, the researchers found that 61.6 percent had care withdrawn, 20.8 percent had care withheld and 17.6 percent received CPR.
Admission diagnoses were placed into three categories: very preterm (less than 32 weeks gestation), congenital anomaly (included preterm and term infants) and other (included infants born after 32 weeks without congenital anomalies). Infant modes of death also fell into three categories: full resuscitation, treatment withheld or treatment withdrawn.
During the 10-year period, 45 percent of deaths were due to major congenital anomalies, according to the study, 17 percent of which were very preterm. Another 35 percent of the deaths were very preterm infants without congenital birth defects. Researchers found that of the infants who died with a birth defect, the leading diagnoses were congenital heart disease (38.4 percent), congenital diaphragmatic hernia (21.1 percent) and trisomies (8.2 percent).
Parental involvement in the deciding the infant mode of death during the 10-year period was not well-documented, the researchers noted, but it occurred 86.5 percent of the time. “Parents were least likely to participate in end-of-life planning when the mode of death was full resuscitation. For infants with withdrawn or withheld treatment, parents directed the end-of-life decisions 96 percent and 93 percent of the time, respectively,” Julie A. Weiner, DO, of the department of neonatology at Children's Mercy, and colleagues wrote. “Parental involvement in guiding mode of death from preterm infants increased from 41 percent in 1999 to 94 percent in 2008.”
As researchers hypothesized, the trends of 1990s toward decreasing use of CPR at the time of neonatal death had continued to increase, rising 1.03 percent annually during the study.
“Although there was no change in frequency of withdrawal of treatment in our study during the last decade, there was a significant increase in withholding of treatment for very preterm infants. At the beginning of the decade, about 10 percent of preterm infants who died had treatment withheld, by the end of the period, withholding treatment was about as frequent for very preterm infants as for those with congenital anomalies,” Weiner and colleagues wrote.
The increasing withholding of care may suggest improvement in earlier recognition of medical futility, according to the study, as well as a desire to provide a peaceful death for the dying infant. Authors recommended further investigation and recommend parental involvement as a high priority in end-of-life decision-making.
There were 7,240 admissions to the NICU at Children’s Mercy Hospital from 1999 through 2008, according to the study. During the same time period, there were 417 infant deaths, three of which were excluded from the study due to atypical NICU admissions. Of the 414 infant deaths studied, the researchers found that 61.6 percent had care withdrawn, 20.8 percent had care withheld and 17.6 percent received CPR.
Admission diagnoses were placed into three categories: very preterm (less than 32 weeks gestation), congenital anomaly (included preterm and term infants) and other (included infants born after 32 weeks without congenital anomalies). Infant modes of death also fell into three categories: full resuscitation, treatment withheld or treatment withdrawn.
During the 10-year period, 45 percent of deaths were due to major congenital anomalies, according to the study, 17 percent of which were very preterm. Another 35 percent of the deaths were very preterm infants without congenital birth defects. Researchers found that of the infants who died with a birth defect, the leading diagnoses were congenital heart disease (38.4 percent), congenital diaphragmatic hernia (21.1 percent) and trisomies (8.2 percent).
Parental involvement in the deciding the infant mode of death during the 10-year period was not well-documented, the researchers noted, but it occurred 86.5 percent of the time. “Parents were least likely to participate in end-of-life planning when the mode of death was full resuscitation. For infants with withdrawn or withheld treatment, parents directed the end-of-life decisions 96 percent and 93 percent of the time, respectively,” Julie A. Weiner, DO, of the department of neonatology at Children's Mercy, and colleagues wrote. “Parental involvement in guiding mode of death from preterm infants increased from 41 percent in 1999 to 94 percent in 2008.”
As researchers hypothesized, the trends of 1990s toward decreasing use of CPR at the time of neonatal death had continued to increase, rising 1.03 percent annually during the study.
“Although there was no change in frequency of withdrawal of treatment in our study during the last decade, there was a significant increase in withholding of treatment for very preterm infants. At the beginning of the decade, about 10 percent of preterm infants who died had treatment withheld, by the end of the period, withholding treatment was about as frequent for very preterm infants as for those with congenital anomalies,” Weiner and colleagues wrote.
The increasing withholding of care may suggest improvement in earlier recognition of medical futility, according to the study, as well as a desire to provide a peaceful death for the dying infant. Authors recommended further investigation and recommend parental involvement as a high priority in end-of-life decision-making.