Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit

Kathleen L. Meert, Susan Eggly, Murray Pollack, K. J.S. Anand, Jerry Zimmerman, Joseph Carcillo, Christopher J.L. Newth, J. Michael Dean, Douglas F. Willson, Carol Nicholson, Sabrina Heidemann, Maureen Frey, Terrance L. Albrecht, Michael Bell, Jean Reardon, Sandy Romero, Parthak Prodhan, Glenda Hefley, Thomas Brogan, Ruth BarkerShekhar T. Venkataraman, Alan Abraham, Jeffrey I. Gold, Elizabeth Ferguson, J. Francisco Fajardo, Rick Harrison, Jeri Burr, Amy Donaldson, Richard Holubkov, Devinder Singh, Rene Enriquez, Tammara Jenkins

Research output: Contribution to journalArticlepeer-review

169 Scopus citations

Abstract

OBJECTIVE: Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians communicate more effectively. Our objective is to describe parents' perceptions of their conversations with physicians regarding their child's terminal illness and death in the pediatric intensive care unit (PICU). DESIGN: A secondary analysis of a qualitative interview study. SETTING: Six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. PARTICIPANTS: Fifty-six parents of 48 children who died in the PICU 3-12 months before the study. INTERVENTIONS: Parents participated in audio recorded semistructured telephone interviews. Interviews were analyzed using established qualitative methods. MEASUREMENTS AND MAIN RESULTS: Of the 56 parents interviewed, 40 (71%) wanted to provide feedback on the way information about their child's terminal illness and death was communicated by PICU physicians. The most common communication issue identified by parents was the physicians' availability and attentiveness to their informational needs. Other communication issues included honesty and comprehensiveness of information, affect with which information was provided, withholding of information, provision of false hope, complexity of vocabulary, pace of providing information, contradictory information, and physicians' body language. CONCLUSIONS: The way bad news is discussed by physicians is extremely important to most parents. Parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend. Withholding prognostic information from parents often leads to false hopes and feelings of anger, betrayal, and distrust. Future research is needed to investigate whether the way bad news is discussed influences psychological adjustment and family functioning among bereaved parents.

Original languageEnglish
Pages (from-to)2-7
Number of pages6
JournalPediatric Critical Care Medicine
Volume9
Issue number1
DOIs
StatePublished - Jan 2008

Keywords

  • Communication
  • Critical care
  • Death
  • Parents
  • Physicians
  • Prognosis

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