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Easing of Suffering in Children With Cancer at the End of Life: Is Care Changing?

Joanne Wolfe, Jim F. Hammel, Kelly E. Edwards, Janet Duncan, Michael Comeau, Joanna Breyer, Sarah A. Aldridge, Holcombe E. Grier, Charles Berde, Veronica Dussel, Jane C. Weeks

From the Departments of Pediatric Oncology and Medical Oncology, and the Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Departments of Medicine and Anesthesia, Children's Hospital Boston; Departments of Psychiatry and Medicine, Brigham and Women's Hospital; and Harvard Medical School, Boston, MA

Corresponding author: Joanne Wolfe, MD, MPH, Dana-Farber Cancer Institute, 44 Binney St, SM-205, Boston, MA 02115; e-mail: Joanne_wolfe{at}dfci.harvard.edu

Purpose: In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life.

Methods: Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort).

Results: In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002).

Conclusion: Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.

Supported by Grant No. NCI 5 K07 CA096746 from the National Cancer Institute and a Child Health Research Grant from the Charles H. Hood Foundation Inc (J.W.); by the Office of Enrichment Programs, Harvard Medical School (J.H.); by the Alexandra Miliotis Fellowship in Pediatric Oncology and the Neil Samuel Ghiso Foundation also through the Office of Enrichments Programs, Harvard Medical School (K.E.E.); and by a fellowship from the Agency for Health Research and Quality (T32HP10018; V.D.). The Pediatric Advanced Care Team has been generously supported by grants from the Hasbro Children's Foundation (1998 to 2000), the Education Development Center's Initiative for Pediatric Palliative Care (2000 to 2002), and the Stephen E. and Catherine Pappas Palliative Care Fund (2004 to 2014).

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.