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Impact on Treatment Goals and Integration of Palliative Care

Joanne Wolfe, MD, MPH; Neil Klar, PhD; Holcombe E. Grier, MD; Janet Duncan, RN, MS; Susanne Salem-Schatz, ScD; Ezekiel J. Emanuel, MD, PhD; Jane C. Weeks, MD, MSc

JAMA. 2000;284:2469-2475.

Context  Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more effective care.

Objectives  To evaluate parental understanding of prognosis in children who die of cancer and to assess the association of this factor with treatment goals and the palliative care received by children.

Design, Setting, and Participants  Survey, conducted between September 1997 and August 1998, of 103 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital, Boston, Mass, and who died of cancer between 1990 and 1997 (72% of those eligible and those located) and 42 pediatric oncologists.

Main Outcome Measure  Timing of parental understanding that the child had no realistic chance for cure compared with the timing of physician understanding of this prognosis, as documented in the medical record.

Results  Parents first recognized that the child had no realistic chance for cure a mean (SD) of 106 (150) days before the child's death, while physician recognition occurred earlier at 206 (330) days before death. Among children who died of progressive disease, the group characterized by earlier recognition of this prognosis by both parents and physicians had earlier discussions of hospice care (odds ratio [OR], 1.03; 95% confidence interval [CI], 1.01-1.06; P = .01), better parental ratings of the quality of home care (OR, 3.31; 95% CI, 1.15-9.54; P = .03), earlier institution of a do-not-resuscitate order (OR, 1.03; 95% CI, 1.00-1.06; P = .02), less use of cancer-directed therapy during the last month of life (OR, 2.80; 95% CI, 1.05-7.50; P = .04), and higher likelihood that the goal of cancer-directed therapy identified by both physician and parent was to lessen suffering (OR, 5.17; 95% CI, 1.86-14.4; P = .002 for physician and OR, 6.56; 95% CI, 1.54-27.86; P = .01 for parents).

Conclusion  Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care.

Author Affiliations: Departments of Pediatric Oncology (Drs Wolfe and Grier), Biostatistical Science (Dr Klar), and Adult Oncology (Dr Weeks), and the Center for Outcomes and Policy Research (Drs Wolfe and Weeks), Dana-Farber Cancer Institute, Boston, Mass; the Department of Medicine (Drs Wolfe, Grier, and Salem-Schatz, and Ms Duncan), Children's Hospital, Boston, Mass; Department of Medicine, Brigham and Women's Hospital, Boston, Mass (Dr Weeks); Division of Preventive Oncology Cancer Care Ontario, Toronto (Dr Klar); and Department of Clinical Bioethics, National Institutes of Health, Bethesda, Md (Dr Emanuel).

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