Talking with parents about end-of-life decisions for their children

Title

Talking with parents about end-of-life decisions for their children

Creator

de Vos MA; Bos AP; Plötz FB; van Heerde M; de Graaff Bert M; Tates K; Truog RD; Willems DL

Publisher

Pediatrics

Date

2015

Subject

adolescent; Child; Female; Humans; infant; Male; Intensive Care Units; Palliative Care; Advance Directives; decision making; Pediatrics; Withholding Treatment; Prospective Studies; Professional-Family Relations; Communication; Life Support Care; Netherlands; Qualitative Research; Pediatric; adolescent; Preschool; decision making; infant; Newborn; DNAR; Professional-Family Relations; Pediatrics; Advance Directives; Communication

Description

BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians' and parents' communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision. CONCLUSIONS: We conclude that parents are able to handle a more active role than they are currently being given. Parents' greatest concern is that their child might suffer.
2015-02

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

e465-476

Issue

2

Volume

135

Citation

de Vos MA; Bos AP; Plötz FB; van Heerde M; de Graaff Bert M; Tates K; Truog RD; Willems DL, “Talking with parents about end-of-life decisions for their children,” Pediatric Palliative Care Library, accessed August 1, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14506.

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