These children identified their deaths as an outcome of their decisions to end or limit treatment, understood that they were participating in decisions about the end of their own lives, and recognized the consequences of their decisions, the researchers said. A report on this study, which was done as part of the Palliative and End-of-Life Care Program at St. Jude, appears in the Sept. 19 online issue of Journal of Clinical Oncology.
The St. Jude study was important because research on end-of-life preferences has typically focused only on parents and clinicians rather than the children, according to Pamela Hinds, Ph.D., R.N., director of nursing research at St. Jude and first author of the report.
In the study, 20 participants 10 to 20 years old being treated at either St. Jude or Sydney Children's Hospital participated in one of three end-of-life decisions: enrollment on a Phase I study of a drug that would not benefit them in their terminal stage (seven patients); adoption of a "do-not-resuscitate [DNR]" order (five patients), or initiation of terminal care, i.e., aggressive treatment of disease symptoms rather than the disease itself (eight patients).
A striking finding was that consideration of others' preferences was the factor most frequently reported to affect decision making by patients, parents and physicians, Hinds said. This indicates that human relationships strongly influence end-of-life decisions in pediatric oncology, she added.
Another key finding was that, among 11 of the 20 patients, a part of the decision-making process included the wish to benefit others, even though they
Contact: Kelly Perry
St. Jude Children's Research Hospital