More insight into the end-of-life decision-making process

A Dutch study found that end-of-life decisions (ELD) are an important aspect of end-of-life care for children between one and 17 years old and that those decisions include choices to refrain from life-prolonging treatment and to relieve pain or symptoms, according to a report in the September issue of Archives of Pediatrics & Adolescent Medicine.

Most studies of end-of-life decisions (defined as decisions that intentionally or otherwise hasten death) have focused on adults or newborn infants, according to background information in the article. End-of-life decisions range from decisions to forgo potentially life-sustaining treatments and decisions to alleviate pain or other symptoms by using drugs with a possible life-shortening effect, to decisions to give physician assistance in dying, that is, the use of drugs with the aim of ending life.

Astrid M. Vrakking, M.Sc., of Erasmus MC, University Medical Center Rotterdam, the Netherlands, and colleagues conducted two studies to assess the frequency of end-of-life decisions preceding child death and the characteristics of the decision-making process in the Netherlands. The first was a death certificate study in which all 129 physicians reporting the death of a child aged one to 17 years between August and 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.

"Some 36 percent of all deaths of children between the ages of one and 17 years during the relevant period were preceded by an end-of-life decision: 12 percent by a decision to refrain from potentially life-prolonging treatment; 21 percent by the alleviation of pain or symptoms with a possible life-shortening effect; and 2.7 percent by the use of drugs with the explicit intention of hastening death," the authors report. "The interview study examined 76 cases of end-of-life decision making. End-of-life decisions were discussed with all nine competent and three partly competent children, with the parents in all cases, with other physicians in 75 cases, and with nurses in 66 cases."

"End-of-life decision making is an important aspect of end-of-life care for children younger than 18 years," the authors conclude. "An ELD is made in about one third of the deaths in this age group, although physician-assisted dying is rare in this age group, especially for older children. … Communication about end-of-life decision making for children typically involves caregivers, parents, and, if possible, the child. To gain more insight into the end-of-life decision-making process, experiences and opinions of parents and other caregivers, such as nursing staff, should be studied as well."