Pediatric Supportive Care (PDQ®): Supportive care - Health Professional Information [NCI] - End of Life
Many aspects of end-of-life care for adults and children with cancer overlap. At the same time, specific developmental, family, and even legal issues are unique to children and require careful consideration. State laws related to withdrawal or withholding of care vary, and end-of-life care may be affected by whether a child is in the custody of biologic parents or legal guardians or is a ward of the state. Some states do not permit DNR decisions to be made for children in their care. Health care teams have a responsibility to be aware of state laws, hospital policies, and ethical standards in their community and integrate this information into end-of-life care. Ultimately, the challenge is to balance available intervention and support with unique family, child, and physician concerns in a way that optimizes quality of life for the child and family. (Refer to the PDQ summary on Last Days of Life for more information.)
- Linabery AM, Ross JA: Childhood and adolescent cancer survival in the US by race and ethnicity for the diagnostic period 1975-1999. Cancer 113 (9): 2575-96, 2008.
- Kochanek KD, Kirmeyer SE, Martin JA, et al.: Annual summary of vital statistics: 2009. Pediatrics 129 (2): 338-48, 2012.
- Hechler T, Blankenburg M, Friedrichsdorf SJ, et al.: Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr 220 (3): 166-74, 2008 May-Jun.
- Berg SL, Chamberlain MC: Systemic chemotherapy, intrathecal chemotherapy, and symptom management in the treatment of leptomeningeal metastasis. Curr Oncol Rep 5 (1): 29-40, 2003.
- Friedrichsdorf SJ, Menke A, Brun S, et al.: Status quo of palliative care in pediatric oncology-a nationwide survey in Germany. J Pain Symptom Manage 29 (2): 156-64, 2005.
- Field MJ, Behrman RE, eds.: When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: Institute of Medicine, National Academies Press, 2003. Also available online. Last accessed January 4, 2013.
- Mack JW, Joffe S, Hilden JM, et al.: Parents' views of cancer-directed therapy for children with no realistic chance for cure. J Clin Oncol 26 (29): 4759-64, 2008.
- Mack JW, Hilden JM, Watterson J, et al.: Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23 (36): 9155-61, 2005.
- Johnston DL, Nagel K, Friedman DL, et al.: Availability and use of palliative care and end-of-life services for pediatric oncology patients. J Clin Oncol 26 (28): 4646-50, 2008.
- Fowler K, Poehling K, Billheimer D, et al.: Hospice referral practices for children with cancer: a survey of pediatric oncologists. J Clin Oncol 24 (7): 1099-104, 2006.
- Johnston DL, Nagel K, O'Halloran C, et al.: Complementary and alternative medicine in pediatric oncology: availability and institutional policies in Canada--a report from the Children's Oncology Group. Pediatr Blood Cancer 47 (7): 955-8, 2006.
- O'Mara A: Complementary and alternative medicine research and cooperative groups: can it happen? J Pediatr Oncol Nurs 23 (5): 258-60, 2006 Sep-Oct.
- Dussel V, Kreicbergs U, Hilden JM, et al.: Looking beyond where children die: determinants and effects of planning a child's location of death. J Pain Symptom Manage 37 (1): 33-43, 2009.
- Himelstein BP, Hilden JM, Boldt AM, et al.: Pediatric palliative care. N Engl J Med 350 (17): 1752-62, 2004.
- Friedman DL, Hilden JM, Powaski K: Issues and challenges in palliative care for children with cancer. Curr Pain Headache Rep 9 (4): 249-55, 2005.