TY - JOUR
T1 - Medical end-of-life decisions for children in the Netherlands
AU - Vrakking, Astrid M.
AU - Van Der Heide, Agnes
AU - Arts, Willem Frans M.
AU - Pieters, Rob
AU - Van Der Voort, Edwin
AU - Rietjens, Judith A.C.
AU - Onwuteaka-Philipsen, Bregje D.
AU - Van Der Maas, Paul J.
AU - Van Der Wal, Gerrit
PY - 2005/9
Y1 - 2005/9
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=24344488460&partnerID=8YFLogxK
U2 - 10.1001/archpedi.159.9.802
DO - 10.1001/archpedi.159.9.802
M3 - Article
C2 - 16143738
AN - SCOPUS:24344488460
SN - 1072-4710
VL - 159
SP - 802
EP - 809
JO - Archives of Pediatrics and Adolescent Medicine
JF - Archives of Pediatrics and Adolescent Medicine
IS - 9
ER -