Parental experience with death in the pediatric ICU

Kathleen L. Meert, Celia Thurston, Ashok P. Sarnaik

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Introduction: Care given to families at the time of a child's death may influence how well families cope with their loss. We evaluated the perceptions of parents regarding their child's death in the pediatric ICU, as well as their satisfaction with the care provided to them during and after their child's death. Methods: Letters were sent to the parents of all children who died in the ICU between Jan. 1, 1995 and June 30, 1998 inviting them to participate in a telephone interview. Parents were asked 73 closed-ended and 6 open-ended questions. Parental experience and satisfaction were evaluated with a subset of 44 questions. Results: Seventy-eight parents of 155 children agreed to be interviewed, 24 refused and 55 were unable to be contacted. Fifty-one (65%) of 78 parents were with their child at the time of death. Although none regretted being present, 17 parents who were not present had regrets (p<.001, Fisher's exact test). Seventy-three (94%) parents had adult family members with them at the time of death, 68 of whom found family presence helpful. Seventy-three (94%) parents had a chaplain available, 60 of whom found the chaplain helpful. Organ donation was requested of 14 (18%) parents, 4 of whom found the request offensive. Of those not asked, 7 offered the organs, 15 wanted to be asked, 12 assumed the organs could not be used and 23 did not want to be asked. The need for autopsy was discussed with 61 (78%) parents, 15 of whom found the discussion offensive. Sixty-two (79%) parents received bereavement cards or telephone calls from hospital staff, 59 of whom found this follow-up helpful. The quality of support provided to parents was graded (1 = poor and 5 = excellent). Eleven (14%) parents scored quality of support ≤ 2. These parents more often felt uniniformed (9/11 vs 19/67, p<.001, Fisher's exact test), did not understand the cause of death (7/11 vs 15/67, p<.01) and were less likely to have received follow-up (5/11 vs 10/66, p<.05). Conclusions: Parental presence at the time of a child's death may facilitate the grief response. Family and chaplain support are often beneficial. Providing parents with the opportunity to ask questions before leaving the hospital and again at a later time may improve overall satisfaction with care.

Original languageEnglish
Pages (from-to)A83
JournalCritical Care Medicine
Issue number12 SUPPL.
StatePublished - 1999


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