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Study looks at end of life issues in children
Children who die in the hospital may well benefit from coordinated palliative care programs. That is the finding of a study by Vanderbilt researchers at the Monroe Carell Jr. Children’s Hospital at Vanderbilt.
The study in the journal Pediatrics published September, 2004 is authored by Brian Carter, M.D. a neonatologist at Vanderbilt Children’s Hospital, Matthew Howenstein, a student at the Vanderbilt School of Medicine, Mary Jo Gilmer, R.N., Ph.D., director of the Pediatric Advanced Comfort Team, Pat Throop, R.N. and Dan France, Ph.D., of the Center for Clinical Improvement and Jim Whitlock, M.D. the chief of pediatric oncology,.
The study looked at 105 children who died between July 2000 and June 2001 after being hospitalized longer than a day.
The researchers found that 87 percent of the children died in an intensive care unit: either the pediatric critical care unit (PCCU) or the neonatal intensive care unit (NICU). Most were young, less than three months old, and stayed in the intensive care unit for a week or longer before death.
In the final days of life, pain was clearly being addressed with the prescription of medications in 90 percent of the children, yet little documentation (34 percent) was present in the medical record to assess level of pain control.
There was little or no involvement of hospice or a specialized palliative care team. Some babies, more than 10 percent, continued to have distressing symptoms like crying or shortness of breath before they died, others received cardiopulmonary resuscitation before death was declared.
The researchers suggest that more comprehensive services specializing in assessing and administering care for comfort at the end of a child’s life, like hospice or a palliative care service that addresses psychosocial, spiritual and other quality of life aspects of care, be utilized more frequently for children and their families in the hospital setting.