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Published online September 1, 2004
PEDIATRICS Vol. 114 No. 3 September 2004, pp. e361-e366 (doi:10.1542/peds.2003-0654-F)
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ELECTRONIC ARTICLE

Circumstances Surrounding the Deaths of Hospitalized Children: Opportunities for Pediatric Palliative Care

Brian S. Carter, MD*,{ddagger}, Matthew Howenstein, BS{ddagger}, Mary Jo Gilmer, PhD, MBA, RN*,§, Pat Throop, RN, BSN||, Dan France, PhD||, James A. Whitlock, MD*,{ddagger}

* Vanderbilt Children’s Hospital
{ddagger} Vanderbilt University School of Medicine
§ Vanderbilt University School of Nursing
|| Center for Clinical Improvement, Vanderbilt University Medical Center, Nashville, Tennessee

Objectives. Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children, especially pain and symptom management by the multidisciplinary pediatric care team.

Design. Patients in the neonatal intensive care unit, pediatric critical care unit, or general pediatric units of Vanderbilt Children’s Hospital who were hospitalized at the time of death, between July 1, 2000, and June 30, 2001, were identified. Children eligible for the survey had received inpatient EOL care at the hospital for at least 24 hours before death. A retrospective medical record review was completed to describe documentation of care for these children and their families during the last 72 hours of life.

Results. Records of children who had received inpatient EOL care were identified (n = 105). A majority (87%) of children were in an intensive care setting at the time of death. Most deaths occurred in the pediatric critical care unit (56%), followed by the neonatal intensive care unit (31%). Pain medication was received by 90% of the children in the last 72 hours of life, and 55% received additional comfort care measures. The presence of symptoms other than pain was infrequently documented.

Conclusions. The duration of hospitalization for most children dying in this inpatient setting was sufficient for provision of interdisciplinary pediatric palliative care. Management of pain and other symptoms was accomplished for many children. The documentation of pain and symptom assessment and management can be improved but requires new tools.

Key Words: children • palliative care • pain and symptom management

Abbreviations: EOL, end of life • NICU, neonatal intensive care unit • PCCU, pediatric critical care unit • VCH, Vanderbilt Children’s Hospital • LOS, length of stay • DNR, do not resuscitate

Accepted Apr 6, 2004.


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