Clinical report - Forgoing medically provided nutrition and hydration in children

Pediatrics

Volumn 124, Issue 2, 2009, Pages 813-822

  Diekema, Douglas S ^e   Botkin, Jeffrey R ^e   Matheny Antommaria, Armand H ^e   Holzman, Ian R ^e   Katz, Aviva I ^e   Leuthner, Steven R ^e   Ross, Lainie Friedman ^e   Webb, Sally A ^e   Baese, Philip ^a   Levetown, Marcia ^b   Lyerly, Anne D ^c   Tsai, Ellen ^d   Berg, Jessica Wilen ^e   Baker, Alison ^e  

^a American Academy of Child and Adolescent Psychiatry   (United States)

^b AMERICAN BOARD OF PEDIATRICS   (United States)

^c AMERICAN COLLEGE OF OBSTETRICIANS AND GYNECOLOGISTS   (United States)

^d CANADIAN PAEDIATRIC SOCIETY   (Canada)

^e NONE

Author keywords

Children; End of life decision making; Ethics; Fluids; Hydration; Nutrition; Withholding life sustaining treatment

Indexed keywords

CHILD HEALTH CARE; CHILD NUTRITION; CONSULTATION; ENTERIC FEEDING; ETHICAL DECISION MAKING; HUMAN; HYDRATION; INTENSIVE CARE; MEDICAL ETHICS; MEDICOLEGAL ASPECT; PRIORITY JOURNAL; REVIEW;

ADOLESCENT; ADULT; CHILD; CHILD, PRESCHOOL; DISABLED CHILDREN; ETHICS, MEDICAL; FEEDING METHODS; FLUID THERAPY; HUMANS; INFANT; INFANT, NEWBORN; LEGAL GUARDIANS; MEDICAL FUTILITY; RISK ASSESSMENT; TERMINAL CARE; TREATMENT REFUSAL; UNITED STATES; WITHHOLDING TREATMENT;

EID: 67749101918     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2009-1299     Document Type: Review

References (70)

1. Burns JP, Mitchell C, Griffith JL, Truog RD. End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses. Crit Care Med. 2001;29(3):658-664
2. Keenan HT, Diekema DS, O'Rourke PP, Cummings P, Woodrum DE. Attitudes toward limitation of support in a pediatric intensive care unit. Crit Care Med. 2000;28(5):1590-1594
3. Garros D, Rosychuk RJ, Cox PN. Circumstances surrounding end of life in a pediatric intensive care unit. Pediatrics. 2003;112(5). Available at: www.pediatrics.org/cgi/content/full/112/5/e371
4. Vernon DD, Dean JM, Timmons OD, Banner W Jr, Allen-Webb EM. Modes of death in the pediatric intensive care unit: withdrawal and limitation of supportive care. Crit Care Med. 1993;21(11): 1798-1802
5. Carter BS, Howenstein M, Gilmer MJ, Throop P, France D, Whitlock JA. Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care. Pediatrics. 2004; 114(3). Available at: www.pediatrics.org/cgi/content/full/114/3/e361
6. Burns JP, Mitchell C, Outwater KM, et al. End-of-life care in the pediatric intensive care unit after the forgoing of life-sustaining treatment. Crit Care Med. 2000;28(8):3060-3066
7. Copnell B. Death in the pediatric ICU: caring for children and families at the end of life. Crit Care Nurs Clin North Am. 2005;17(4):349-360, x
8. Tan GH, Totapally BR, Torbati D, Wolfsdorf J. End-of-life decisions and palliative care in a children's hospital. J Palliat Med. 2006;9(2):332-342
9. American Academy of Pediatrics, Committee on Bioethics. Guidelines on forgoing life-sustaining medical treatment. Pediatrics. 1994;93(3):532-536
10. Bell EF; American Academy of Pediatrics, Committee on Fetus and Newborn. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics. 2007;119(2):401-403
11. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions. Washington, DC: US Government Printing Office; 1983
12. American Medical Association, Council on Ethical and Judicial Affairs. Code of Medical Ethics: Current Opinions and Annotations. 2006-2007 ed. Chicago, IL: American Medical Association; 2006
13. American Academy of Neurology, Executive Board. Position of the American Academy of Neurology on certain aspects of the care and management of the persistent vegetative state patient. Neurology. 1989;39(1):125-126
14. American Nurses Association. Position Statement: Foregoing Nutrition and Fluid. Silver Spring, MD: American Nurses Association; 1992. Available at: www.nursingworld.org/ethicshumanrights. Accessed May 21, 2008
15. Hospice and Palliative Nurses Association. Artificial Nutrition and Hydration. Pittsburgh, PA: Hospice and Palliative Nurses Association; 2003. Available at: www.hpna.org/pdf/ Artificial-Nutrition-and-Hydration-PDF.pdf. Accessed May 21, 2008
16. American Academy of Hospice and Palliative Medicine. Statement on Artificial Nutrition and Hydration Near the End of Life. Glenview, IL: American Academy of Hospice and Palliative Medicine; 2006. Available at: www.aahpm.org/positions/nutrition.html. Accessed May 21, 2008
17. American College of Physicians. Ethics Manual. 5th ed. Philadelphia, PA: American College of Physicians; 2005
18. Derse AR. Limitation of treatment at the end-of-life: withholding and withdrawal. Clin Geriatr Med. 2005;21(1):223-238, xi
19. Ahronheim JC, Gasner MR. The sloganism of starvation. Lancet. 1990;335(8684):278-279
20. Bernat JL, Gert B, Mogielnicki RP. Patient refusal of hydration and nutrition: an alternative to physician-assisted suicide or voluntary active euthanasia. Arch Intern Med. 1993;153(24): 2723-2727
21. Quill TE, Lo B, Brock DW. Palliative options of last resort: a comparison of voluntarily stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia. JAMA. 1997;278(23):2099-2104
22. Printz LA. Terminal dehydration, a compassionate treatment. Arch Intern Med. 1992;152(4): 697-700
23. Cranford RE. Withdrawing artificial feeding from children with brain damage. BMJ. 1995; 311(7003):464-465
24. McCue JD. The naturalness of dying. JAMA. 1995;273(13):1039-1043
25. Siegler M, Weisbard AJ. Against the emerging stream: should fluids and nutrition support be discontinued? Arch Intern Med. 1985;145(1):129 -131
26. Callahan D. On feeding the dying. Hastings Cent Rep. 1983;13(5):22
27. Derr PG. Why food and fluids can never be denied. Hastings Cent Rep. 1986;16(2):28-30
28. Lynn J, Childress JF. Must patients always be given food and water? Hastings Cent Rep. 1983;13(5): 17-21
29. Nelson LJ, Rushton CH, Cranford RE, Nelson RM, Glover JJ, Truog RD. Forgoing medically provided nutrition and hydration in pediatric patients. J Law Med Ethics. 1995;23(1):33-46
30. Frader JE. Discontinuing artificial fluids and nutrition: discussions with children's families. Hastings Cent Rep. 2007;37(1):49
31. Slomka J. What do apple pie and motherhood have to do with feeding tubes and caring for the patient. Arch Intern Med. 1995;155(12):1258-1263
32. Winter S. Terminal nutrition: framing the debate for the withdrawal of nutritional support in terminally ill patients. Am J Med. 2000;109(9):723-726
33. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA. 1999;282(14):1365-1370
34. Porta N, Frader J. Withholding hydration and nutrition in newborns. Theor Med Bioeth. 2007;28(5): 443-451
35. Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state (1). N Engl J Med. 1994;330(21):1499-1508
36. Strauss DJ, Ashwal S, Day SM, Shavelle RM. Life expectancy of children in vegetative and minimally conscious states. Pediatr Neurol. 2000;23(4):312-319
37. Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state (2) [published correction appears in N Engl J Med. 1995;333(2):130]. N Engl J Med. 1994;330(22):1572-1579
38. Ashwal S. Medical aspects of the minimally conscious state in children. Brain Dev. 2003;25(8): 535-545
39. Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance directives for medical care: a case for greater use. N Engl J Med. 1991;324(13):889-895
40. Anonymous. Right to die: the public's view. New York Times. June 26, 1990:A18
41. Saad L. Americans choose death over vegetative state: most would have feeding tube removed for their child, spouse, or themselves. In: Gallup A, Newport F, eds. The Gallup Poll: Public Opinion March 29, 2005. Lanham, MD: Rowman & Littlefield; 2006:116-118
42. Sherman R. Bioethics debate: poll reveals attitudes on a wide range of issues, from criminal liability for pregnant substance abusers to informing patients of a physician's HIV status. Natl Law J. 1991;13(36):30-31
43. Bernat JL, Beresford HR. The controversy over artificial hydration and nutrition. Neurology. 2006; 66(11):1618-1619
44. Larriviere D, Bonnie RJ. Terminating artificial nutrition and hydration in persistent vegetative state patients: current and proposed state laws. Neurology. 2006;66(11):1624-1628
45. Blendon RJ, Benson JM, Herrmann MJ. The American public and the Terri Schiavo case. Arch Intern Med. 2005;165(22):2580-2584
46. Perry JE, Churchill LR, Kirshner HS. The Terri Schiavo case: legal, ethical, and medical perspectives. Ann Intern Med. 2005;143(10):744-748
47. Payne K, Taylor RM, Stocking C, Sachs GA. Physicians' attitudes about the care of patients in the persistent vegetative state: a national survey. Ann Intern Med. 1996;125(2):104-110
48. Davis DS. Shifting the burden of proof. Second Opin. 1993;18(3):31-36
49. The Harris Poll: poll shows strong support for range of health practices. Wall Street Journal Online. October 20, 2005. Available at: http://online.wsj.com/public/article-print/ SB112973460667273222.html. Accessed May 21, 2008
50. Casarett D, Kapo J, Caplan A. Appropriate use of artificial nutrition and hydration: fundamental principles and recommendations. N Engl J Med. 2005;353(24):2607-2612
51. Schnakers C, Zasler ND. Pain assessment and management in disorders of consciousness. Curr Opin Neurol. 2007;20(6):620-626
52. Cranford RE. The vegetative and minimally conscious states: ethical implications. Geriatrics. 1998;53(suppl 1):S70-S73
53. Carter BS, Leuthner SR. The ethics of withholding/withdrawing nutrition in the newborn. Semin Perinatol. 2003;27(6):480-487
54. Brody H, Campbell M, Faber-Langendoen K, Ogle KS. Withdrawing intensive life-sustaining treatment: recommendations for compassionate clinical management. N Engl J Med. 1997;336(9): 652-657
55. Pasman HR, Onwuteaka-Philipsen BD, Kriegsman DM, Ooms ME, Ribbe MW, van der Wal G. Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone. Arch Intern Med. 2005;165(15):1729-1735
56. Johnson J, Mitchell C. Responding to parental requests to forego pediatric nutrition and hydration. J Clin Ethics. 2000;11(2):128-135
57. McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients: the appropriate use of nutrition and hydration. JAMA. 1994;272(16):1263-1266
58. Glover JJ, Caniano DA, Balint J. Ethical challenges in the care of infants with intestinal failure and lifelong total parenteral nutrition. Semin Pediatr Surg. 2001;10(4):230-236
59. Heine RG, Bines JE. New approaches to parental nutrition in infants and children. J Paediatr Child Health. 2002;38(5):433-437
60. Mittal NK, Tzakis AG, Kato T, Thompson JF. Current status of small bowel transplantation in children: update 2003. Pediatr Clin North Am. 2003;50(6):1419-1433, ix
61. Sigurdsson L, Reyes J, Kocoshis SA. Intestinal transplantation in children. Curr Gastroenterol Rep. 1999;1(3):259-265
62. Morrison RS, Meier DE. Palliative care. N Engl J Med. 2004;350(25):2582-2590
63. Himelstein BP, Hilden JM, Boldt AM, Weissman D. Pediatric palliative care. N Engl J Med. 2004; 350(17):1752-1762
64. Carter BS, Levetown M, eds. Palliative Care for Infants, Children, and Adolescents: A Practical Handbook. Baltimore, MD: Johns Hopkins University Press; 2004
65. Meisel A. The legal consensus about forgoing life-sustaining treatment: its status and its prospects. Kennedy Inst Ethics J. 1992;2(4):309-345
66. Levi BH. Withdrawing nutrition and hydration from children: legal, ethical, and professional issues. Clin Pediatr (Phila). 2003;42(2):139-145
67. Truog RD, Cochrane TI. Refusal of hydration and nutrition: irrelevance of the "artificial" vs "natural" distinction. Arch Intern Med. 2005;165(22):2574-2576
68. Cruzan v Director, Missouri Department of Health. 497 US 261 (1990)
69. Child Abuse Prevention and Treatment Act. 42 USC §5101 et seq (1994)
70. Kopelman LM, Irons TG, Kopelman AE. Neonatologists judge the "Baby Doe" regulations. N Engl J Med. 1988;318(11):677-683