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.

*Decision Making, Adolescent, Child, Child, Preschool, Death Certificates, Euthanasia, Passive/statistics & numerical data, Euthanasia/*statistics & numerical data, Female, Hospitals, Pediatric, Humans, Infant, Interviews as Topic, Male, Netherlands/epidemiology, Pediatrics/*statistics & numerical data, Physician-Patient Relations, Professional-Family Relations, Questionnaires, Retrospective Studies, Suicide, Assisted/statistics & numerical data, Terminal Care/*methods
dx.doi.org/10.1001/archpedi.159.9.802, hdl.handle.net/1765/13906
Archives of Pediatrics & Adolescent Medicine
Erasmus MC: University Medical Center Rotterdam

Vrakking, A.M, van der Heide, A, Arts, W.F.M, Pieters, R, van der Voort, E, Rietjens, J.A.C, … van der Wal, G. (2005). Medical end-of-life decisions for children in the Netherlands. Archives of Pediatrics & Adolescent Medicine, 159(9), 802–809. doi:10.1001/archpedi.159.9.802