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Astrid M. Vrakking, MSc; Agnes van der Heide, MD, PhD; Willem Frans M. Arts, MD, PhD; Rob Pieters, MD, PhD; Edwin van der Voort, MD; Judith A. C. Rietjens, MSc; Bregje D. Onwuteaka-Philipsen, PhD; Paul J. van der Maas, MD, PhD; Gerrit van der Wal, MD, PhD

Arch Pediatr Adolesc Med. 2005;159:802-809.

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.

Author Affiliations: Department of Public Health, Erasmus MC (Drs Vrakking, van der Heide, and Rietjens, and Prof van der Maas) and Erasmus MC-Sophia, Children’s Hospital (Profs Arts and Pieters and Dr van der Voort), University Medical Center Rotterdam, Rotterdam, the Netherlands; Department of Public and Occupational Health and Institute for Research in Extramural Medicine, VU University Medical Center Amsterdam, Amsterdam, the Netherlands (Dr Onwuteaka-Philipsen and Prof van der Wal). Dr Vrakking is now with the Department of Intensive Care, Erasmus MC, University Medical Center Rotterdam.

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