Medical end-of-life decisions for children in the Netherlands.
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.
Vrakking
Astrid M
AM
Department of Public Health, Erasmus MC and Erasmus MC-Sophia, Children's Hospital, University Medical Center Rotterdam, Rotterdam, the Netherlands. a.vrakking@erasmusmc.nl
van der Heide
Agnes
A
Arts
Willem Frans M
WF
Pieters
Rob
R
van der Voort
Edwin
E
Rietjens
Judith A C
JA
Onwuteaka-Philipsen
Bregje D
BD
van der Maas
Paul J
PJ
van der Wal
Gerrit
G
D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003644:Death Certificates; D003657:Decision Making; D005065:Euthanasia / Q000706:statistics & numerical data*; D005066:Euthanasia, Passive / Q000706:statistics & numerical data; D005260:Female; D006776:Hospitals, Pediatric; D006801:Humans; D007223:Infant; D007407:Interviews as Topic; D008297:Male; D009426:Netherlands / Q000453:epidemiology; D010372:Pediatrics / Q000706:statistics & numerical data*; D010817:Physician-Patient Relations; D011368:Professional-Family Relations; D012189:Retrospective Studies; D017236:Suicide, Assisted / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods*