End-of-Life Care Preferences of Pediatric Patients With Cancer

TLDR

The perspective of terminally ill children during end‑of‑life decisions has not been formally studied. This study sought to identify the preferences and influencing factors for end‑of‑life care among children and adolescents with advanced cancer. Twenty pediatric patients (10–20 years) and their parents and oncologists were interviewed separately with open‑ended questions about end‑of‑life decisions. Eighty‑nine percent of patients accurately recalled treatment options and understood that their decisions led to death, with caring for others, parents’ respect for the child’s wishes, and physicians’ prognosis assessment emerging as key factors, indicating that children could engage in complex decision making and that relationship‑based motives outweighed developmental expectations.

Abstract

The viewpoint of the terminally ill child at the time of an end-of-life decision has not been formally investigated. We identified the preferences of children and adolescents with advanced cancer about their end-of-life care and the factors that influenced their decisions.Pediatric patients 10 or more years of age were interviewed within 7 days of participating in one of the following three end-of-life decisions: enrollment onto a phase I trial (n = 7), adoption of a do not resuscitate order (n = 5), or initiation of terminal care (n = 8). The patient, a parent, and the primary pediatric oncologist were interviewed separately by using open-ended interview questions.Twenty patients, aged 10 to 20 years (mean, 17 years and 4 months), with a refractory solid tumor (n = 12), brain tumor (n = 4), or leukemia (n = 4) participated. Eighteen patients (90%) accurately recalled all of their treatment options and identified their own death as a consequence of their decision. The factors that were most frequently identified included the following: for patients, caring about others (n = 19 patients); for parents, the child's preferences (n = 18 parents); and for physicians, the patient's prognosis and comorbid conditions (n = 14 physicians).These children and adolescents with advanced cancer realized that they were involved in an end-of-life decision, understood the consequences of their decision, and were capable of participating in a complex decision process involving risks to themselves and others. The decision factors most frequently reported by patients were relationship based; this finding is contrary to existing developmental theories.