End-of-life care preferences of pediatric patients with cancer.
OBJECTIVE
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.


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).


CONCLUSIONS
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.
Hinds
Pamela S
PS
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
Drew
Donna
D
Oakes
Linda L
LL
Fouladi
Maryam
M
Spunt
Sheri L
SL
Church
Christopher
C
Furman
Wayne L
WL
D000293:Adolescent; D000328:Adult; D000533:Altruism; D002648:Child; D003430:Cross-Sectional Studies; D003643:Death; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000534:rehabilitation*; D010287:Parent-Child Relations; D011379:Prognosis; D013727:Terminal Care