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Attitudes and Practices Among Pediatric Oncologists Regarding End-of-Life Care: Results of the 1998 American Society of Clinical Oncology Survey

From the Department of Pediatric Hematology/Oncology, Children’s Hospitals and Clinics—St Paul, St Paul, MN; Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, Bethesda, MD; Center for Research Methodology and Biometrics, AMC Cancer Research Center, Denver, CO; Department of Pediatrics, Stanford University School of Medicine, Palo Alto, CA; Pain and Palliative Care Service, Memorial Sloan-Kettering Cancer Center, New York, NY; and Center for Survey Research, University of Massachusetts/Division of Hematology and Oncology, Beth Israel/Deaconess Medical Center, and Department of Medical Adult Oncology, Dana-Farber Cancer Institute, Boston, MA.

Address reprint requests to Joanne M. Hilden, MD, Department of Pediatric Hematology/Oncology, Children’s Hospitals and Clinics—St Paul, 345 N Smith Ave, St Paul, MN 55102; email hilde005{at}tc.umn.edu

PURPOSE: In 1998, the American Society of Clinical Oncology (ASCO) surveyed its membership to assess the attitudes, practices, and challenges associated with end-of-life care of patients with cancer. In this report, we summarize the responses of pediatric oncologists and the implications for care of children dying from cancer.

METHODS: The survey consisted of 118 questions, covering eight categories. All ASCO members in the United States, Canada, and the United Kingdom were mailed a survey, which was completed by 228 pediatric oncologists. Predictors of particular attitudes and practices were identified using stepwise logistic regression analysis. Potential predictors were age, sex, religious affiliation, importance of religious beliefs, recent death of a relative, specialty, type of practice (rural or urban, academic or nonacademic), amount of time spent in patient care, number of new patients in the past 6 months, and number of patients who died in the past year.

RESULTS: Pediatric oncologists reported a lack of formal courses in pediatric palliative care, a strikingly high reliance on trial and error in learning to care for dying children, and a need for strong role models in this area. The lack of an accessible palliative care team or pain service was often identified as a barrier to good care. Communication difficulties exist between parents and oncologists, especially regarding the shift to end-of-life care and adequate pain control.

CONCLUSION: Pediatric oncologists are working to integrate symptom control, psychosocial support, and palliative care into the routine care of the seriously ill child, although barriers exist that make such comprehensive care a challenge.

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