How children die in hospital

A retrospective analysis was performed to describe the course of terminal c are provided to dying hospitalized children in terms of symptom assessment and management, and communication and decision-malting, at the end of life. Seventy-seven of 236 infants and children who died after hospital admissio n in Edmonton, Canada between January 1996 and June 1998 met entry criteria . Only children who died after a minimum hospitalization of 24 hours in the case of chronic illness or after a minimum hospitalization of 7 days follo wing an acute event were included. Unanticipated deaths were excluded. Eigh ty-three percent of children died in intensive care settings (64/77), and 7 8% (60/77) were intubated prior to their death. Symptoms were recorded in n arrative progress notes. Five of 77 (6%) charts contained specific pain ass essment and treatment records. Opioid analgesia was provided in 84% of all cases (65/77). Six (8%) patients had do not resuscitate (DNR) orders preced ing final hospital admission and 56/71 (79%) remaining patients had documen ted discussion resulting in DNR decision during final hospital admission. M edian time from DNR to death was < 1 day. Mode of death was withdrawal of t herapy in 33/77 (43%), no cardiopulmonary resuscitation (CPR) in 26/77 (34% ), and failed CPR in 13/77 (17%). Five children were declared brain dead. I n only one case was there evidence in the medical record of the possibility of death being discussed explicitly with the patient. Decision-making rega rding end-of-life issues in this pediatric population was deferred very clo se to the time of death, and only after no remaining curative therapy was a vailable. Acuity of care was very high prior to death. Children are rarely told that they are dying. J Pain Symptom Manage 2000;20:417-423. (C) U.S. C ancer Pain Relief Committee, 2000.