Originally published as JCO Early Release 10.1200/JCO.2005.10.538 on September 19 2005
Journal of Clinical Oncology, Vol 23, No 36 (December 20), 2005: pp. 9146-9154
© 2005 American Society of Clinical Oncology.
End-of-Life Care Preferences of Pediatric Patients With Cancer
Pamela S. Hinds,
Donna Drew,
Linda L. Oakes,
Maryam Fouladi,
Sheri L. Spunt,
Christopher Church,
Wayne L. Furman
From the 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; Baptist Memorial College of Health Sciences, Memphis, TN; and Centre for Children's Cancer and Blood Disorders, Sydney Children's Hospital, Sydney, Australia
Address reprint requests to Pamela S. Hinds, RN, PhD, 332 N Lauderdale, Memphis, TN 38105; e-mail: pam.hinds{at}stjude.org
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.
Supported by Grants from Project on Death in America (the Soros Foundation) and the Oncology Nursing Foundation; by Grant No. P30 CA-21765 from the National Cancer Institute; and by the American Lebanese Syrian Associated Charities.
Authors' disclosures of potential conflicts of interest are found at the end of this article.
Related Editorial
- Pediatric Palliative Care: Relationships Matter and So Does Pain Control
Mildred Z. Solomon and David Browning
JCO 2005 23: 9055-9057
[Full Text]
This article has been cited by other articles:
|
|
|
|
 
P. S. Hinds, J. Brandon, C. Allen, N. Hijiya, R. Newsome, and J. R. Kane
Patient-reported Outcomes in End-of-Life Research in Pediatric Oncology
J. Pediatr. Psychol.,
October 1, 2007;
32(9):
1079 - 1088.
[Abstract]
[Full Text]
[PDF]
|
|
|
|
|
|
|
N. Andre
Decisional Priority in Pediatric Oncology Revisited: Involving Children in Decision Making
J. Clin. Oncol.,
May 1, 2006;
24(13):
2131 - 2131.
[Full Text]
[PDF]
|
|
|
|
|
|
|
M. Z. Solomon and D. Browning
Pediatric Palliative Care: Relationships Matter and So Does Pain Control
J. Clin. Oncol.,
December 20, 2005;
23(36):
9055 - 9057.
[Full Text]
[PDF]
|
|
|
|
