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End-of-Life Practices Among Tertiary Care PICUs in the United States: A Multicenter Study
Kathleen L Meert1, Linda Keele, Wynne Morrison
11Department of Pediatrics, Children's Hospital of Michigan, Detroit, MI. 2Department of Anesthesia and Critical Care Medicine, Valley Children's Hospital, Madera, CA. 3Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA. 4Department of Critical Care Medicine, Phoenix Children's Hospital, Phoenix, AZ. 5Department of Anesthesiology and Critical Care Medicine, Children's Hospital Los Angeles, Los Angeles, CA. 6Department of Pediatrics, Mattel Children's Hospital at University of California at Los Angeles, Los Angeles, CA. 7Department of Pediatrics, Children's National Medical Center, Washington, DC. 8Department of Pediatrics, University of Michigan, C. S. Mott Children's Hospital, Ann Arbor, MI. 9Department of Critical Care Medicine, Children's Hospital of Pittsburgh, Pittsburgh, PA. 10Department of Pediatrics, University of Utah School of Medicine, University of Utah, Salt Lake City, UT. 11Eunice Kennedy Shriver National Institute of Child Health and Human Development, Rockville, MD. 12Department of Pediatrics, Washington University School of Medicine, St. Louis Children's Hospital, St. Louis, MO.
Insights
Most pediatric deaths in intensive care units occur after life support withdrawal. Significant variation exists in organ donation and autopsy practices across U.S. pediatric intensive care units (PICUs).
Area of Science:
- Pediatric Critical Care Medicine
- End-of-Life Care
- Medical Ethics
Background:
- End-of-life care decisions in pediatric intensive care units (PICUs) are complex and can vary significantly.
- Understanding these practices is crucial for improving care quality and consistency.
Purpose of the Study:
- To describe the variability in end-of-life practices within tertiary care PICUs in the United States.
- To analyze the frequency of life support limitation or withdrawal and associated consultations.
Main Methods:
- Secondary analysis of prospectively collected data from 10,078 patients admitted to PICUs within the Collaborative Pediatric Critical Care Research Network (CPCCRN).
- Focus on patients (n=275) who died during their hospital stay, analyzing mode of death, family discussions, and consultations.
Main Results:
- 2.7% of patients died in PICUs; 92% died within the PICU. Life support was limited or withdrawn in 51% of deaths.
- Organ donation was requested in 37% of cases, with a 20% donation rate; autopsy was requested in 37% of non-medical examiner cases.
- Palliative care was consulted in 39% of cases where life support was discussed.
Conclusions:
- The majority of deaths in CPCCRN PICUs involve withdrawal or limitation of life support.
- There is considerable variation in organ donation requests and autopsy performance across different PICUs.
Objective:
To describe variability in end-of-life practices among tertiary care PICUs in the United States.
Design:
Secondary analysis of data prospectively collected from a random sample of patients (n = 10,078) admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013.
Setting:
Seven clinical centers affiliated with the Collaborative Pediatric Critical Care Research Network.
Patients:
Patients included in the primary study were less than 18 years old, admitted to a PICU, and not moribund on PICU admission. Patients included in the secondary analysis were those who died during their hospital stay.
Interventions:
None.
Measurements And Main Results:
Two hundred and seventy-five (2.7%; range across sites, 1.3-5.0%) patients died during their hospital stay; of these, 252 (92%; 76-100%) died in a PICU. Discussions with families about limitation or withdrawal of support occurred during the initial PICU stay for 173 patients (63%; 47-76%; p = 0.27) who died. Of these, palliative care was consulted for 67 (39%; 12-46%); pain service for 11 (6%; 10 of which were at a single site); and ethics committee for six (3%, from three sites). Mode of death was withdrawal of support for 141 (51%; 42-59%), failed cardiopulmonary resuscitation for 53 (19%; 12-28%), limitation of support for 46 (17%; 7-24%), and brain death for 35 (13%; 8-20%); mode of death did not differ across sites (p = 0.58). Organ donation was requested from 101 families (37%; 17-88%; p < 0.001). Of these, 20 donated (20%; 0-64%). Sixty-two deaths (23%; 10-53%; p < 0.001) were medical examiner cases. Of nonmedical examiner cases (n = 213), autopsy was requested for 79 (37%; 17-75%; p < 0.001). Of autopsies requested, 53 (67%; 50-100%) were performed.
Conclusions:
Most deaths in Collaborative Pediatric Critical Care Research Network-affiliated PICUs occur after life support has been limited or withdrawn. Wide practice variation exists in requests for organ donation and autopsy.
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