Clinical Pediatric Emergency Medicine
Volume 8, Issue 3 , Pages 212-219 , September 2007

Pediatric End-of-Life Issues and Palliative Care

  • Kelly Nicole Michelson, MD, MPH

      Affiliations

    • Department of Pediatrics, Northwestern University Feinberg School of Medicine, Children's Memorial Hospital, Chicago, IL
    • Division of Pediatric Critical Care, Children's Memorial Hospital, Chicago, IL
    • Section on Clinical Research, Buehler Center on Aging, Northwestern University, Chicago, IL
    • Bridges–Pediatric Palliative Care Program, Children's Memorial Hospital, Chicago, IL
    • Dr Michelson's efforts are supported in part by a National Institute of Child Health and Human Development grant 1K23HD054441-01, “Developing a Pediatric Advance Care Planning Worksheet,” Principal Investigator, Dr Kelly Michelson, Children's Memorial Hospital, and by a National Institute of Child Health and Human Development grant K12 HD047349, “Pediatric Critical Care Scientist Development Program” Principal Investigator, Dr J Michael Dean, University of Utah.
    • Corresponding Author InformationReprint requests and correspondence: Kelly Nicole Michelson, MD, MPH, Children's Memorial Hospital, Division of Critical Care Medicine-Box 73, 2300 Children's Plaza, Chicago, IL 60614.
  • ,
  • David M. Steinhorn, MD

      Affiliations

    • Department of Pediatrics, Northwestern University Feinberg School of Medicine, Children's Memorial Hospital, Chicago, IL
    • Division of Pediatric Critical Care, Children's Memorial Hospital, Chicago, IL
    • Bridges–Pediatric Palliative Care Program, Children's Memorial Hospital, Chicago, IL

References 

  1. Arnold RM. Clinical practice guidelines for quality palliative care. Brooklyn, NY: National Consensus Project for Quality Palliative Care; 2004;
  2. Committee on Palliative and End-of-Life Care for Children and Their Families, Board on Health Sciences Policy, Institute of Medicine . When children die: improving palliative and end-of-life care for children and their families. Washington, DC: The National Academies Press; 2003;
  3. Field MJ, Cassel CK. Approaching death: improving care at the end of life. Washington, DC: National Academy Press; 1997;
  4. Emergency Nurses Association. Position statement: end-of-life care in the emergency department. Available at: http://www.ena.org/about/position/PDFs/End-of-LifeCare.PDF. Accessed March 15, 2007.
  5. Feudtner C, Connor SR. Epidemiology and health services research. In:  Carter BS,  Levetown M editor. Palliative care for infants, children, and adolescents: a practical handbook. Baltimore, MD: The Johns Hopkins University Press; 2004;p. 3–22
  6. Hoyert DL, Heron MP, Murphy SL, et al. Deaths: final data for 2003. Natl Vital Stat Rep. 2006;54:1–120
  7. Carter BS, Howenstein M, Gilmer MJ, et al. Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care. Pediatrics. 2004;114:e361–e366
  8. McCallum DE, Byrne P, Bruera E. How children die in hospital. J Pain Symptom Manage. 2000;20:417–423
  9. Hamilton BE, Minino AM, Martin JA, et al. Annual summary of vital statistics: 2005. Pediatrics. 2007;119:345–360
  10. Himelstein BP, Hilden JM, Boldt AM, et al. Pediatric palliative care. N Engl J Med. 2004;350:1752–1762
  11. World Health Organization. WHO definition of palliative care. Available at: http://www.who.int/cancer/palliative/definition/en/. Accessed April 5, 2007.
  12. Truog RD, Cist AF, Brackett SE, et al. Recommendations for end-of-life care in the intensive care unit: the Ethics Committee of the Society of Critical Care Medicine. Crit Care Med. 2001;29:2332–2348
  13. American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care . Palliative care for children. Pediatrics. 2000;106(2 Pt 1):351–357
  14. Sahler OJ, Frager G, Levetown M, et al. Medical education about end-of-life care in the pediatric setting: principles, challenges, and opportunities. Pediatrics. 2000;105(3 Pt 1):575–584
  15. Himelstein BP. Palliative care for infants, children, adolescents, and their families. J Palliative Med. 2006;9:163–181
  16. Lunney JR, Lynn J, Foley DJ, et al. Patterns of functional decline at the end of life. JAMA. 2003;289:2387–2392
  17. National Institutes of Health. State-of-the-science conference statement improving end-of-life care. Available at: http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024PDF.pdf. Accessed April 5, 2007.
  18. Center for Applied Ethics. The initiative for pediatric palliative care. Available at: http://www.ippcweb.org/. Accessed April 5, 2007.
  19. Truog RD, Meyer EC, Burns JP. Toward interventions to improve end-of-life care in the pediatric intensive care unit. Crit Care Med. 2006;34(11 Suppl):S373–S379
  20. Browning DM, Solomon MZ. The initiative for pediatric palliative care: an interdisciplinary educational approach for healthcare professionals. J Pediatr Nurs. 2005;20:326–334
  21. Kreicbergs U, Valdimarsdottir U, Onelov E, et al. Talking about death with children who have severe malignant disease. N Engl J Med. 2004;351:1175–1186
  22. Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med. 2000;342:326–333
  23. Supporting kids in pain. Information and support for children, teenagers and parents: complex regional pain syndrome. Available at: http://shsskip.swan.ac.uk/Information/Pain%20Terms.htm. Accessed April 5, 2007.
  24. World Health Organization. Pain IAftSo: cancer pain relief and palliative care in children. Geneva: World Health Organization; 1998;
  25. Greco C, Berde C. Pain management for the hospitalized pediatric patient. Pediatr Clin North Am. 2005;52:995–1027
  26. Berde CB, Sethna NF. Analgesics for the treatment of pain in children. N Engl J Med. 2002;347:1094–1103
  27. Sykes N, Thorns A. The use of opioids and sedatives at the end of life. Lancet Oncology. 2003;4:312–318
  28. Good PD, Ravenscroft PJ, Cavenaugh J. Effects of opioids and sedatives on survival in an Australian inpatient palliative care population. Int J Med. 2005;35:512–517
  29. American Pain Society. Definitions related to the use of opioids for the treatment of pain. Available at: http://www.ampainsoc.org/advocacy/opioids2.htm. Accessed April 5, 2007.
  30. Puntillo K, Casella V, Reid M. Opioid and benzodiazepine tolerance and dependence: application of theory to critical care practice. Heart Lung. 1997;26:317–324
  31. Anghelescu DL, Oakes L, Hinds PS. Palliative care and pediatrics. Anesthesiol Clin. 2006;24:145–161
  32. Kazak AE, Penati B, Brophy P, et al. Pharmacologic and psychologic interventions for procedural pain. Pediatrics. 1998;102(1 Pt 1):59–66
  33. Robinson MR, Thiel MM, Backus MM, et al. Matters of spirituality at the end of life in the pediatric intensive care unit. Pediatrics. 2006;118:e719–e729
  34. Sharman M, Meert KL, Sarnaik AP. What influences parents' decisions to limit or withdraw life support?. Pediatr Crit Care Med. 2005;6:513–518
  35. Davies B, Brenner P, Orloff S, et al. Addressing spirituality in pediatric hospice and palliative care. J Palliat Care. 2002;18:59–67
  36. Frader J, Michelson K. Ethics in pediatric intensive care. In:  Fuhrman B,  Zimmerman J editor. Pediatric critical care. 3rd ed. Philadelphia (Pa): Elsevier; 2006;p. 117–125
  37. Buchanan A, Brock DW. Deciding for others. Milbank Q. 1986;64(Suppl. 2):17–94
  38. Solomon MZ, Sellers DE, Heller KS, et al. New and lingering controversies in pediatric end-of-life care. Pediatrics. 2005;116:872–883
  39. Burns JP, Mitchell C. Is there any consensus about end-of-life care in pediatrics?. Arch Pediatr Adolesc Med. 2005;159:889–891
  40. Baverstock A, Finlay F. Specialist registrars' emotional responses to a patient's death. Arch Dis Child. 2006;91:774–776
  41. Meier DE, Back AL, Morrison RS. The inner life of physicians and care of the seriously ill. JAMA. 2001;286:3007–3014
  42. Chan GK. End-of-life models and emergency department care. Acad Emerg Med. 2004;11:79–86
  43. Chan GK. End-of-life and palliative care in the emergency department: a call for research, education, policy and improved practice in this frontier area. J Emerg Nurs. 2006;32:101–103
  44. O'Malley P. American Academy of Pediatrics Committee on Pediatric Emergency Medicine. Patient- and family-centered care and the role of the emergency physician providing care to a child in the emergency department. Pediatrics. 2006;118(5):2242–2246

PII: S1522-8401(07)00033-X

doi: 10.1016/j.cpem.2007.06.006

Clinical Pediatric Emergency Medicine
Volume 8, Issue 3 , Pages 212-219 , September 2007