The Process of End-of-Life Decision-Making in Pediatrics: A National Survey in the Netherlands

Abstract

Within Dutch pediatrics, end-of-life decisions are team decisions. Pediatric specialists differ considerably in how they involve parents in end-of-life decision-making, ranging from benevolent paternalism to parental autonomy. Main conflict-solving strategies are taking more time and extending discussions.

Talking With Parents About End-of-Life Decisions for Their Children

“…This outcome confirms the finding of earlier studies that physicians make considerable efforts to prevent potential conflicts from escalating. [46][47][48] Seen in this light, the choice of physicians to come forward to the wishes of the parents who Our study suggests that in most cases parents' intense emotions of anxiety, grief, and distress did not hinder them from asking relevant questions and from clearly explaining their considerations and preferences. It could even be argued that these emotions, especially the parents' fear of losing their child and their anxiety of seeing their child suffer, heightened their alertness and awareness.…”

Infants’ Best Interests in End-of-life Care for Newborns

“…Within the professional team, views may differ on the chances of survival and, more often, on the quality of life if the child survives. 7,8 The decision that further treatment is becoming futile is therefore not a 1-step decision: it takes time and repeated team discussions to realize that this is the case. In almost all situations, professional teams will be able to reach a consensus despite possible differences.…”

End-of-Life Decisions in Pediatric Cancer Patients

“…ELDs are defined as decisions concerning administering or forgoing treatment that may unintentionally or intentionally hasten death. 3,4 In clinical practice, these ELDs range from decisions to abstain from potentially life-prolonging treatments, such as mechanical ventilation or drip feeding, to decisions to alleviate pain or other symptoms by using drugs in dosages that may involve a life-shortening effect. 3,4 In the Netherlands, ELDs may also include decisions for euthanasia or physician-assisted dying.…”

“…3,4 In clinical practice, these ELDs range from decisions to abstain from potentially life-prolonging treatments, such as mechanical ventilation or drip feeding, to decisions to alleviate pain or other symptoms by using drugs in dosages that may involve a life-shortening effect. 3,4 In the Netherlands, ELDs may also include decisions for euthanasia or physician-assisted dying. According to the Euthanasia Act, euthanasia and physician-assisted dying can be legal for minors aged 12 to 16 years if parents agree with the request of the child, and for minors aged 16 or 17 years if parents are informed.…”