Should children with severe cognitive impairment receive solid organ transplants?

Journal of Clinical Ethics

Volumn 11, Issue 3, 2000, Pages 219-229

  Orr, Robert D ^a   Johnston, Joyce K ^b   Ashwal, Stephen ^b   Bailey, Leonard L ^a  

^a LOMA LINDA UNIVERSITY MEDICAL CENTER   (United States)

^b LOMA LINDA UNIVERSITY CHILDREN S HOSPITAL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CASE REPORT; CHILD; COGNITIVE DEFECT; CONSULTATION; FAMILY; HEALTH CARE AND PUBLIC HEALTH; HEALTH CARE ORGANIZATION; HUMAN; MEDICAL ETHICS; MENTAL DEFICIENCY; MENTAL HEALTH THERAPIES; ORGAN TRANSPLANTATION; PATIENT CARE; PATIENT SELECTION; PROFESSIONAL PATIENT RELATIONSHIP; REOPERATION; STANDARD; UNITED STATES;

HEALTH CARE AND PUBLIC HEALTH; MENTAL HEALTH THERAPIES; PROFESSIONAL PATIENT RELATIONSHIP;

CHILD; COGNITION DISORDERS; CONSULTANTS; ETHICS, MEDICAL; FAMILY; HEALTH CARE RATIONING; HUMANS; MENTAL RETARDATION; ORGAN TRANSPLANTATION; PATIENT CARE TEAM; PATIENT SELECTION; REOPERATION; UNITED STATES;

EID: 0034265324     PISSN: 10467890     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (53)

1. J.F. Kilner, Who Lives? Who Dies?Ethical Criteria in Patient Selection (New Haven, Conn.: Yale University Press, 1990).
2. M.D. Allen et al., "Who Gets a Heart? Rationing and Rationalization in Heart Transplantation," Western Journal of Medicine 166, no. 5 (1997): 326-36.
3. G.R. Winslow, "The Concept of Triage in Modern Medicine," in Triage and Justice (Berkley, Calif.: University of California Press, 1982), 1-23.
4. J.L. Levenson and M.E. Olbrisch, "Psychosocial Evaluation of Organ Transplant Candidates," Psychosomatics 34, no. 4 (1993): 314-23.
5. M. Weis and W. von Scheidt, "Cardiac Allograft Vasculopathy: A Review," Circulation 96, no. 6 (1997): 2069-77.
6. N. Mulla et al., "Transplant Coronary Artery Disease in Children: Indications and Timing of Re-transplantation," (unpublished manuscript, 1996).
7. R.D. Orr and R.M. Perkin, "Clinical Ethics Consultations with Children," The Journal of Clinical Ethics 5, no. 4 (winter 1994): 323-8.
8. S. Ashwal, R.M. Perkin, and R.D. Orr, "When Too Much Is Not Enough," Pediatric Annals 21, no. 5 (1992): 311-7.
9. T.L. Beauchamp and J.F. Childress, "Justice," in Principles of Biomedical Ethics, 4th ed. (New York: Oxford University Press, 1994), 326-94.
10. See note 1 above.
11. Council on Ethical and Judicial Affairs, American Medical Association, "Ethical Considerations in the Allocation of Organs and Other Scarce Medical Resources among Patients," Archives of Internal Medicine 155, no. 1 (1995): 29-40.
12. L.J. Schneiderman and N.S. Jecker, "Medical Futility: Its Meaning and Ethical Implications," Annals of Internal Medicine 112, no. 12 (1990): 949-54.
13. J.M. Luce, "Physicians Do Not Have a Responsibility to Provide Futile or Unreasonable Care if a Patient or Family Insists," Critical Care Medicine 23 no. 4 (1995): 760-6.
14. Society of Critical Care Medicine Ethics Committee, "Consensus Statement on the Triage of Critically Ill Patients," Journal of the American Medical Association 271, no. 15 (1994): 1200-3.
15. A.H. Moss, "To Use Dialysis Appropriately: The Emerging Consensus on Patient Selection Guidelines," Advances in Renal Replacement Therapy 2, no. 2 (1995): 175-83.
16. R.M. Perkin et al., "Long-Term Ventilation in Children with Severe Central Nervous System Impairment," Seminars in Neurology 17, no. 3 (1997): 239-48.
17. R.M. Veatch, The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality (New York: Oxford University Press, 1986).
18. D. Goode, ed., Quality of Life for People with Disabilities: International Perspectives and Issues (Cambridge, Mass.: Brookline Books, 1994); R. Schalock, ed., Quality of Life, Volume 1: Conceptualization and Measurement and Quality of Life, Volume 2: Applications to Persons with Disabilities (Washington, D.C.: American Association on Mental Retardation, 1996, 1997).
19. D. Goode, ed., Quality of Life for People with Disabilities: International Perspectives and Issues (Cambridge, Mass.: Brookline Books, 1994); R. Schalock, ed., Quality of Life, Volume 1: Conceptualization and Measurement and Quality of Life, Volume 2: Applications to Persons with Disabilities (Washington, D.C.: American Association on Mental Retardation, 1996, 1997).
20. D.J. Strauss, R.M. Shavelle, and T.W. Anderson, "Life Expectancy of Children with Cerebral Palsy," Pediatric Neurology 18, no. 2 (1998): 143-9.
21. J.U. Chrichton, M. Mackinnon, and C.P. White, "The Life-Expectancy of Persons with Cerebral Palsy," Developmental Medicine and Child Neurology 37 (1995): 567-76.
22. R.K. Eyman et al., "Survival of Profoundly Disabled People with Severe Mental Retardation," American Journal of Diseases of Children 147 no. 3 (1993): 329-36.
23. J.L. Hutton, T. Cooke, and P.O.D. Pharoah, "Life Expectancy in Children with Cerebral Palsy," British Medical Journal 309, no. 6952 (1994): 431-5.
24. D. Strauss et al., "Prognosis for Survival and Improvement in Function in Children with Severe Developmental Disabilities," Journal of Pediatrics 131, no. 5 (1997): 712-7.
25. 1H-MRS in Perinatal CNS Insults," Pediatric Neurology 17, no. 4 (1997): 309-18.
26. B.A. Holshouser et al., "Proton MR Spectroscopy after Acute Central Nervous System Injury: Outcome Prediction in Neonates, Infants, and Children," Radiology 202, no. 2 (1997): 487-96.
27. S. Ashwal et al., "Proton Magnetic Resonance Spectroscopy in the Evaluation of Children with Congenital Heart Disease and Acute Central Nervous System Injury," Journal of Thoracic and Cardiovascular Surgery 112, no. 2 (1996): 403-14.
28. J. Beca et al., "Somatosensory Evoked Potentials for Prediction of Outcome in Acute Severe Brain Injury," Journal of Pediatrics 126, no. 1 (1995): 44-9; L.M. Frank, T.L. Furgiuele, and J.B. Etheridge, "Prediction of Chronic Vegetative State in Children Using Evoked Potentials," Neurology 35, no. 6 (1985): 931-4
29. J. Beca et al., "Somatosensory Evoked Potentials for Prediction of Outcome in Acute Severe Brain Injury," Journal of Pediatrics 126, no. 1 (1995): 44-9; L.M. Frank, T.L. Furgiuele, and J.B. Etheridge, "Prediction of Chronic Vegetative State in Children Using Evoked Potentials," Neurology 35, no. 6 (1985): 931-4
30. S. Ashwal and B.A. Holshouser, "New Neuroimaging Techniques and Their Potential Role in Patients with Acute Brain Injury," Head Trauma Rehabilitation 12, no. 4 (1997): 13-35.
31. Ethics Committee Report to the Board of Directors, United Network for Organ Sharing, Arlington, Va., 10-11 January 1990.
32. United Network for Organ Sharing, registry data, 31 August 1998.
33. P.A. Ubel, R.M. Arnold, and A.L. Caplan, "Rationing Failure: The Ethical Lessons of the Retransplantation of Scarce Vital Organs," Journal of the American Medical Association 270, no. 20 (1993): 2469-74.
34. A.H. Moss and M. Siegler, "Should Alcoholics Compete Equally for Liver Transplantation?" Journal of the American Medical Association 265, no. 10 (1991): 1295-8.
35. U.S. Department of Health and Human Services, "Child Abuse and Neglect Prevention and Treatment Program," Federal Register 50 (1985): 14878-901.
36. Americans with Disabilities Act of 1990, 42 U.S.C., sec. 12101-12213.
37. G.E. Pence, "Letting Impaired Newborns Die," in Classic Cases in Medical Ethics, 2nd ed. (New York: McGraw-Hill, 1995), 174-99.
38. House Committee on Education and Labor, 101st Cong., 2d sess, 1990, H.Doc. 485(II), 22.
39. D. Orentlicher, "Rationing and the Americans With Disabilities Act," Journal of the American Medical Association 271, no. 4 (1994): 308-14.
40. D. Orentlicher, "Psychosocial Assessment of Organ Transplant Candidates and the Americans with Disabilities Act," General Hospital Psychiatry 18 (1996): 5S-12S.
41. In re Karen quinlan, 70 N.J. 10, 355 A.2d 647, rev'd 137 N.J. Super. 227, 348 A.2d 801 (1975), cert, denied, 429 U.S. 922 (1976).
42. Cruzan v. Director, 110 S. Ct. 2841 (1990).
43. In re Martin, 538 N.W. 2d 399 (Mich. 1995), petition for cert, filed sub nom., Martin v. Major, 64 U.S.L.W. 3399 (U.S., 20 Nov. 1995) (no. 95-821); In re Robert Wendland, no. 65669, San Joaquin County, Calif., Superior Court, currently under appeal.
44. R.D. Orr and L.R. Genesen, "Requests for 'Inappropriate' Treatment Based on Religious Beliefs," Journal of Medical Ethics 23 (1997): 142-7.
45. Soloveichik v. Rush Presbyterian/St. Luke's Hospital and Soloveichik, Circuit Court, Chancery Division, Cook County, Ill., 19 Jan. 1989.
46. J.J. Paris, R.K. Crone, and F. Reardoln, "Physicians' Refusal of Requested Treatment: The Case of Baby L.," New England Journal of Medicine 322 (1990): 1012-5.
47. S.H. Miles, "Informed Demand for 'Non-Beneficial' Medical Treatment," New England Journal of Medicine 325 (1991): 512-5.
48. In re Baby K, 832 F. Supp. 1022 (E.D. Va. 1993).
49. G.J. Annas, "Asking the Courts to Set the Standard of Emergency Care-The Case of Baby K," New England Journal of Medicine 330 (1994): 1542-5.
50. J.J. Paris et al., "Use of a DNR Order over Family Objections: The Case of Gilgunn v. MGH," Journal of Intensive Care Medicine 14 (1999): 41-5.
51. R.D. Orr, "The Gilgunn Case: Courage and Questions," Journal of Intensive Care Medicine 14 (1999): 54-6.
52. D.H. Fiser, "Assessing the Outcome of Pediatric Intensive Care," Journal of Pediatrics 121 (1992): 68-74.
53. See note 3 above.