Talking With Parents About End-of-Life Decisions for Their Children

Mirjam A de Vos, Albert P Bos, Frans B Plötz, Marc van Heerde, Bert M de Graaff, Kiek Tates, Robert D Truog, Dick L Willems

Research output: Contribution to journalArticleScientificpeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)e465-76
Number of pages12
JournalPediatrics
Volume135
Issue number2
DOIs
Publication statusPublished - Feb 2015

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de Vos, M. A., Bos, A. P., Plötz, F. B., van Heerde, M., de Graaff, B. M., Tates, K., ... Willems, D. L. (2015). Talking With Parents About End-of-Life Decisions for Their Children. Pediatrics, 135(2), e465-76. https://doi.org/10.1542/peds.2014-1903
de Vos, Mirjam A ; Bos, Albert P ; Plötz, Frans B ; van Heerde, Marc ; de Graaff, Bert M ; Tates, Kiek ; Truog, Robert D ; Willems, Dick L. / Talking With Parents About End-of-Life Decisions for Their Children. In: Pediatrics. 2015 ; Vol. 135, No. 2. pp. e465-76.
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title = "Talking With Parents About End-of-Life Decisions for Their Children",
abstract = "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.",
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de Vos, MA, Bos, AP, Plötz, FB, van Heerde, M, de Graaff, BM, Tates, K, Truog, RD & Willems, DL 2015, 'Talking With Parents About End-of-Life Decisions for Their Children', Pediatrics, vol. 135, no. 2, pp. e465-76. https://doi.org/10.1542/peds.2014-1903

Talking With Parents About End-of-Life Decisions for Their Children. / de Vos, Mirjam A; Bos, Albert P; Plötz, Frans B; van Heerde, Marc; de Graaff, Bert M; Tates, Kiek; Truog, Robert D; Willems, Dick L.

In: Pediatrics, Vol. 135, No. 2, 02.2015, p. e465-76.

Research output: Contribution to journalArticleScientificpeer-review

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T1 - Talking With Parents About End-of-Life Decisions for Their Children

AU - de Vos, Mirjam A

AU - Bos, Albert P

AU - Plötz, Frans B

AU - van Heerde, Marc

AU - de Graaff, Bert M

AU - Tates, Kiek

AU - Truog, Robert D

AU - Willems, Dick L

N1 - Copyright © 2015 by the American Academy of Pediatrics.

PY - 2015/2

Y1 - 2015/2

N2 - 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.

AB - 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.

U2 - 10.1542/peds.2014-1903

DO - 10.1542/peds.2014-1903

M3 - Article

C2 - 25560442

VL - 135

SP - e465-76

JO - Pediatrics

JF - Pediatrics

SN - 0031-4005

IS - 2

ER -

de Vos MA, Bos AP, Plötz FB, van Heerde M, de Graaff BM, Tates K et al. Talking With Parents About End-of-Life Decisions for Their Children. Pediatrics. 2015 Feb;135(2):e465-76. https://doi.org/10.1542/peds.2014-1903