Medical end-of-life decisions for children in the Netherlands

Astrid M. Vrakking, Agnes Van Der Heide, Willem Frans M. Arts, Rob Pieters, Edwin Van Der Voort, Judith A.C. Rietjens, Bregje D. Onwuteaka-Philipsen, Paul J. Van Der Maas, Gerrit Van Der Wal

Research output: Contribution to journalArticlepeer-review

49 Citations (Scopus)

Abstract

Background: Most end-of-life decision-making studies have, until now, involved either the general population or newborn infants. Objective: To assess the frequency of end-of-life decisions preceding child death and the characteristics of the decision-making process in the Netherlands. Methods: Two studies were performed. The first was a death certificate study in which all 129 physicians reporting the death of a child aged between 1 and 17 years in the period August to December 2001 received a written questionnaire; the second was an interview study in which face-to-face interviews were held with 63 physicians working in pediatric hospital departments. Results: Some 36% of all deaths of children between the ages of 1 and 17 years during the relevant period were preceded by an end-of-life decision: 12% by a decision to refrain from potentially life-prolonging treatment; 21% by the alleviation of pain or symptoms with a possible life-shortening effect; and 2.7% by the use of drugs with the explicit intention of hastening death. The latter decision was made at the child's request in 0.7% and at the request of the family in 2% of cases. The interview study examined 76 cases of end-of-life decision making. End-of-life decisions were discussed with all 9 competent and 3 partly competent children, with the parents in all cases, with other physicians in 75 cases, and with nurses in 66 cases. Conclusions: While not inconsiderable, the percentage of end-of-life decisions was lower for children than for adults and newborn infants. Most children are not considered to be able to participate in the decision-making process. Decisions are generally discussed with parents and other caregivers and, if possible, with the child.

Original languageEnglish
Pages (from-to)802-809
Number of pages8
JournalArchives of Pediatrics and Adolescent Medicine
Volume159
Issue number9
DOIs
Publication statusPublished - Sept 2005
Externally publishedYes

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