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Medline ® Abstract for Reference 29

of 'Pediatric palliative care'

End-of-life care preferences of pediatric patients with cancer.
Hinds PS, Drew D, Oakes LL, Fouladi M, Spunt SL, Church C, Furman WL
J Clin Oncol. 2005;23(36):9146.
PURPOSE: 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.
PATIENTS AND METHODS: 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.
RESULTS: 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).
CONCLUSION: 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.
Division of Nursing Research and Patient Care Services, Department of Hematology-Oncology, Palliative and End-of-Life Care Task Force, and Ethics Committee, St Jude Children's Research Hospital, Memphis, TN, USA. pam.hinds@stjude.org