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Availability and Use of Palliative Care and End-of-Life Services for Pediatric Oncology Patients

Donna L. Johnston, Kim Nagel, Debra L. Friedman, Jane L. Meza, Craig A. Hurwitz, Sarah Friebert

From the Division of Pediatric Hematology/Oncology, Children's Hospital of Eastern Ontario, Ottawa; Division of Pediatric Hematology/Oncology, Hamilton Health Sciences, Hamilton, Ontario, Canada; Division of Pediatric Hematology/Oncology, Seattle Children's Hospital and Fred Hutchinson Cancer Research Center, Seattle, WA; Department of Preventive and Societal Medicine, University of Nebraska Medical Center, Omaha, NE; Maine Children's Cancer Program and the Division of Pediatric Oncology at the Barbara Bush Children's Hospital, Division of Palliative Care, ME Medical Center, Scarborough, ME; and Divisions of Pediatric Palliative Care and Pediatric Hematology/Oncology, Akron Children's Hospital, Akron, OH

Corresponding author: Donna L. Johnston, MD, Division of Hematology/Oncology, Children's Hospital of Eastern Ontario, 401 Smyth Rd, Ottawa, ON K1H 8L1, Canada; e-mail: djohnston{at}cheo.on.ca

Purpose Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We sought to investigate the current practices and resources surrounding palliative and end-of-life care among participating institutions of the Children's Oncology Group (COG).

Methods A survey regarding practices and resources was developed by the COG palliative care subcommittee and was sent to all 232 institutions to complete for the calendar year 2005.

Results The survey was completed by 81% of the institutions. Per institution, there were a mean of 64.6 newly diagnosed patients and 17.7 patients experiencing relapse. A palliative care team was available in 58% of institutions, a pain service in 90%, a hospice in 60%, a psychosocial support team in 80%, and a bereavement program in 59%. Complementary and alternative medicine was available in 39% of institutions and in 95% of the COG institution's community. Most services, even when available, were not well used by patients.

Conclusion Despite the well-established benefit of pediatric palliative care, it is only offered in 58% of COG institutions caring for children with cancer. In an era where the benefit of palliative care has been clearly established, this number should approach 100%. Efforts should be directed toward understanding barriers to provision of such services, so that they are available and well used at all childhood cancer centers.

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

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