Issues and Challenges in Palliative Care for Children with Cancer Debra L. Friedman, MD, Joanne M. Hilden, MD, and Kristen Powaski, RN Address Division of Hematology/Oncology, University of Washington, Children’s Hospital and Regional Medical Center, 4800 Sand Point Way NE, Seattle, WA 98105, USA. E-mail: debra.friedman@seattlechildrens.org Current Pain and Headache Reports 2005, 9:249–255 Current Science Inc. ISSN 1531-3433 Copyright © 2005 by Current Science Inc. Introduction Over the past 30 years, significant improvements in tech- nology and medicine have resulted in marked increases in survival for children with cancer. It is now estimated that one of every 900 individuals in the United States aged between 16 and 44 years is a survivor of childhood cancer, with an overall cure rate exceeding 75% [1,2]. However, can- cer is also the leading cause of non-accidental death in chil- dren. Each year approximately 2200 children in the United States die from cancer [2,3]. When a child presents with can- cer that is not likely to be curable, due to its metastatic nature, relapse, or progression, it is difficult to balance the interests of the parents, the child, the oncologist, the health- care team, and society [4]. When no clear curative therapy is available, one must consider and balance issues of quality of life, allocation of health-care resources, and advancing the field of pediatric oncology through experimental clinical tri- als. Inability to cure the patient must not be viewed as inability to treat the patient. The focus of treatment is changed to one of supportive rather than curative care. Fam- ilies and treatment team members together develop new goals. In this paper, we present some of the special issues and challenges surrounding pediatric palliative care in chil- dren with cancer. What Is Palliative Care? Palliative care attempts to maximize the quality of life for patients with progressive disease or life-threatening condi- tions, as well as those in the true end stage [5]. The World Health Organization (WHO) defines palliative care as the “active total care of patients whose disease is not responsive to curative treatment” [6]. Palliative care is not synonymous with lack of care and may include chemotherapy, analgesics, other comfort measures, and multidisciplinary supportive care. It is directed at the relief of symptoms and conditions that are distressing or that make life less enjoyable [7]. The WHO definition acknowledges aspects of palliative care that are also applicable earlier in the course of the illness in con- junction with anticancer treatment [6]. Palliative care also tries to ensure that bereaved families have the ability to remain functional and intact. Use of supportive care, geared toward quality of life as opposed to cure, should not be viewed on the part of the health-care team, the family, or the child as abandonment. The American Academy of Pediatrics has also established a definition of palliative care, with special attention paid to pediatric patients. Pediatric palliative care seeks to enhance the quality of life in the face of an ultimately terminal condi- tion. The treatments focus on the relief of symptoms and conditions that cause distress and distract from the child’s enjoyment of life. Such care includes the control of pain and other symptoms and addresses the psychological, social, or spiritual needs of children living with life-threatening or terminal conditions. The goal of palliative care is achieve- ment of the best quality of life for patients and their fami- lies, consistent with their values and regardless of the location of the patient [7]. The American Academy of Pediatrics has published guidelines for pediatric palliative care. These guidelines are summarized as follows: 1) palliative care and respite pro- grams need to be developed and widely available; 2) an inte- grated model of palliative care for children with complex Although the majority of children with cancer are cured of their illness, the children who die from their disease or complications require special care at the end of life. We present special issues and challenges unique to pediatric palliative care and suggest ways in which we can face these issues and address the challenges. The care must be family centered and balance the needs of the health-care system, the child, and the family. The way in which the care is delivered, the services provided, and the place in which that care is given are not carved into a simple protocol. Quality of life is an important concept that is often overlooked. Educational initiatives for patients, families, health-care providers, and third-party payers are essential. Reimbursement for palliative care services presents a large barrier to provision of appropriate services to all children and families in need. Hypothesis-driven research must be developed to help us learn more about how best to deliver end-of-life care to children and their families.