Parental perspectives on end-of-life care in the pediatric intensive care unit

Meyer, Elaine C.; Burns, Jeffrey P.; Griffith, John L.; Truog, Robert D.

doi:10.1097/00003246-200201000-00032

Cited by 277 publications

(307 citation statements)

References 25 publications

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“…A central tenet of physician-parent communication is that parents need information to make treatment decisions for their child. Parents of critically ill children are often faced with serious decisions, including whether life support for their child should be initiated, continued, limited, or withdrawn (20,21). Effective physician-parent communication is necessary to impart information, improve understanding, reduce conflicts, and implement a management plan that is in the best interest of the child.…”

Section: Discussionmentioning

confidence: 99%

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

Meert

Eggly

Pollack

et al. 2008

Pediatric Critical Care Medicine

218

188

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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. Participants-Fifty-six parents of 48 children who died in the PICU 3-12 months before the study. Setting-SixInterventions-Parents participated in audio recorded semistructured telephone interviews. Interviews were analyzed using established qualitative methods. Measurements and MainResults-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

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Section: Discussionmentioning

confidence: 99%

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

Meert

Eggly

Pollack

et al. 2008

Pediatric Critical Care Medicine

218

188

View full text Add to dashboard Cite

show abstract

“…22,24 Curiously enough, the participation of family in end-oflife decisions (9.2%) is lower than that reported in other countries, where it amounts to 100%, in some cases. 21,25,26 There may be several causes for this limited participation: the well-established paternalistic medicine attitude in Brazil, the disorganization of the Brazilian health system, cultural aspects of the population, lack of tradition in the defense of patients interests, among others. It is common knowledge, however, that most Brazilian physicians find it difficult to deal with end-of-life issues.…”

Section: Discussionmentioning

confidence: 99%

Limitação de suporte de vida em três unidades de terapia intensiva pediátrica do sul do Brasil

Lago¹,

Piva²,

Kipper³

et al. 2005

J. Pediatr. (Rio J.)

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Objectives: To describe causes of death and factors involved in the decision-making process related to life support limitation at three university-affiliated pediatric intensive care units in the south of Brazil.Methods: A retrospective study was conducted, based on a review of the medical records of all deaths occurring during 2002 at three pediatric intensive care units in Porto Alegre. Three previously trained pediatric fellows from each service performed the study. Data were assessed relating to general case characteristics, causes of death (failed cardiopulmonary resuscitation, brain death, do-not-resuscitate orders, withholding or withdrawing lifesustaining treatment -the last three modes were classified as the life support limitation group), length of stay in hospital, end-of-life plans and the participation of patients families and Ethics Committees. The Student t test, Mann Whitney, chi-square, odds ratio and multivariate analyses were used for comparisons.Results: Close to 53.3% of fatal cases had received full cardiopulmonary resuscitation. The incidence of life support limitation was 36%, with statistical differences (p = 0.014) between the three hospitals (25 versus 54.3 and 45.5%, respectively). The most frequent form of life support limitation was a do-not-resuscitate order (70%). Life support limitation was associated with the presence of chronic disease (odds ratio = 8.2; 95%CI 3.2-21.3) and length stay in the pediatric intensive care unit (odds ratio = 4.4; 95%CI 1.6-11.8). The rate of involvement of families and Ethics Committees in the decision-making process was lesser than 10%.Conclusions: Cardiopulmonary resuscitation is offered more frequently than is observed in northern countries. In contrast, life support limitation is offered through do-not-resuscitate orders. These findings and the low participation of the families in the decision-making process reflect the difficulties to be overcome by those professionals who are responsible for handling critically ill children in southern Brazil.J Pediatr (Rio J). 2005;81(2):111-7: Death, ethics, pediatric intensive care, forgoing life support, do-notresuscitate orders.

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“…The factors that support them in coping with the loss of their child have received growing attention. [1][2][3][4][5][6][7][8][9][10][11][12][13][14][15] Recent studies show that most parents find it helpful to share in their child's daily care during the dying process. Most of them also find it helpful to share in decisions to withhold or withdraw lifesustaining treatment (LST), decisions that often precede a child's death.…”

Section: What This Study Addsmentioning

confidence: 99%

“…Most of them also find it helpful to share in decisions to withhold or withdraw lifesustaining treatment (LST), decisions that often precede a child's death. 2,3,5,9,11,[16][17][18][19][20] Parents' perception of a shared approach may even lower their grief in the long term. 21 The extent to which parents want to share in the decision-making process differs from parent to parent.…”

Section: What This Study Addsmentioning

confidence: 99%