Signs of life and signs of death: Brain death and other mixed messages at the end of life

Journal of Child Health Care

Volumn 12, Issue 2, 2008, Pages 92-105

  Macdonald, Mary Ellen ^a,b   Liben, Stephen ^b,c   Carnevale, Franco A ^b,c   Cohen, S Robin ^d  

^a Canad Inst of Health Res New Emerging Team: Family Caregiving in Palliative and End of life Care   (Canada)

^b MCGILL UNIVERSITY   (Canada)

^c MONTREAL CHILDREN S HOSPITAL   (Canada)

^d MCGILL UNIVERSITY   (Canada)

Author keywords

Bereavement; Brain death; End of life care; Organ donation; Parental perception

Indexed keywords

ARTICLE; ATTITUDE TO DEATH; ATTITUDE TO HEALTH; BEREAVEMENT; BRAIN DEATH; CANADA; CASE REPORT; CHILD; ETHICS; FEMALE; FRUSTRATION; HEAD INJURY; HEALTH SERVICE; HOSPITAL; HUMAN; HUMAN RELATION; INTENSIVE CARE; INTERPERSONAL COMMUNICATION; LEGAL ASPECT; NURSING METHODOLOGY RESEARCH; ORGANIZATION AND MANAGEMENT; PARENT; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; QUESTIONNAIRE; TERMINAL CARE; TIME; TRANSPLANTATION;

ATTITUDE TO DEATH; ATTITUDE TO HEALTH; BEREAVEMENT; BRAIN DEATH; CANADA; CHILD; COMMUNICATION; CRANIOCEREBRAL TRAUMA; CRITICAL CARE; FEMALE; FRUSTRATION; HEALTH SERVICES NEEDS AND DEMAND; HOSPITALS, PEDIATRIC; HUMANS; INTENSIVE CARE UNITS, PEDIATRIC; NURSING METHODOLOGY RESEARCH; PARENTS; PROFESSIONAL-FAMILY RELATIONS; QUALITATIVE RESEARCH; QUESTIONNAIRES; TERMINAL CARE; TIME FACTORS; TISSUE AND ORGAN PROCUREMENT;

EID: 50349094083     PISSN: 13674935     EISSN: 17412889     Source Type: Journal    
DOI: 10.1177/1367493508088546     Document Type: Article

References (47)

1. American Academy of Pediatrics Committee on Hospital Care and Section on Surgery (2002) 'Pediatric Organ Donation and Transplantation: Policy Statement: Organizational Principles to Guide and Define the Child Health Care System and/or Improve the Health of All Children', Pediatrics 109(5): 982-984.
2. Antonacci, M. (1990) 'Sudden Death: Helping Bereaved Parents in the PICU', Critical Care Nurse 10(4): 65-70.
3. Appel, J.Z. (1968) 'Ethical and Legal Questions Posed by Recent Advances in Medicine', Journal of the American Medical Association 205(7): 513-516.
4. Bartel, D.A., Engler, A.J., Natale, J.E., Misra, V., Lewin, A.B. and Joseph, J.G. (2000) 'Working with Families of Suddenly and Critically Ill Children: Physician Experiences', Archives of Pediatrics and Adolescent Medicine 154(11): 1127-1133.
5. Canadian Organ Replacement Register (2006) 'e-Statistics Report on Transplant, Waiting List and Donor Statistics', (consulted 16 January 2008): http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=reports_corrstats2006c_e
6. Carnevale, F.A. (2005) 'The Palliation of Dying: a Heideggerian Analysis of the "Technologization" of Death', Indo-Pacific Journal of Phenomenology 5(1): 1-12.
7. Chang, M., McBride, L. and Ferguson, M. (2003) 'Variability in Brain Death Declaration Practices in Pediatric Head Trauma Patients', Pediatric Neurosurgery 39(1): 7-9.
8. Chapman, J., Hibberd, A., McCosker, C., Thompson, J., Ross, W., Mahony, J., Byth, P. and MacDonald, G. (1995) 'Obtaining Consent for Organ Donation in Nine NSW Metropolitan Hospitals', Anaesthesia and Intensive Care 23(1): 81-87.
9. Childress, J.F. (1996) 'The Gift of Life: Ethical Issues in Organ Transplantation', Bulletin of the American College of Surgeons 81(3): 8-22.
10. Clark, P.A. (2003) 'To Be or Not to Be a Donor: a Person's Right of Informed Consent', Current Opinion in Organ Transplantation 8(4): 334-340.
11. Dorr, P. (1997) 'Outcomes Manager: Brain Death Criteria in the Pediatric Patient', Critical Care Nursing Quarterly 20(1): 14-21.
12. Edwards, S.D. and Forbes, K. (2003) 'Nursing Practice and the Definition of Human Death', Nursing Inquiry 10(4): 229-235.
13. Franz, H., Dejong, W., Wolfe, S., Nathan, H., Payne, D., Reitsma, W. and Beasley, C. (1997) 'Explaining Brain Death: a Critical Feature of the Donation Process', Journal of Transplant Coordination 7(1): 14-21.
14. Garrison, R., Bentley, F., Raque, G., Polk, H.J., Sladek, L., Evanisko, M. and Lucas, B. (1991) 'There is an Answer to the Shortage of Organ Donors', Surgery, Gynecology and Obstetrics 173(5): 391-396.
15. Halevy, A. and Brody, B. (1993) 'Brain Death: Reconciling Definitions, Criteria, and Tests', Annals of Internal Medicine 119(6): 519-525.
16. Harrison, A.M. and Botkin, J.R. (1999) 'Can Pediatricians Define and Apply the Concept of Brain Death?', Pediatrics 103(6): e82.
17. Joralemon, D. (1995) 'Organ Wars: the Battle for Body Parts', Medical Anthropology Quarterly 9(3): 335-356.
18. Kass, L.R. (1971) 'Death as an Event: a Commentary on Robert Morison', Science 173(3998): 698-702.
19. Kirkham, F.J. (2001) 'Non-traumatic Coma in Children', Archives of Disease in Childhood 85(4): 303-312.
20. Lock, M. (2002) Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley: University of California Press.
21. Lutz-Dettinger, N., de Jaeger, A. and Kerremans, I. (2001) 'Care of the Potential Pediatric Organ Donor', Pediatric Clinics of North America 48(3): 715-749.
22. Macdonald, M.E., Liben, S., Carnevale, F.A., Rennick, J.E., Wolf, S.L., Meloche, D. and Cohen, S.R. (2005) 'Parental Perspectives on Hospital Staff Members, Acts of Kindness and Commemoration After a Child's Death', Pediatrics 116(4): 884-890.
23. Macdonald, M.E., Liben, S. and Cohen, S.R. (2006) 'Truth and Consequences: Parental Perspectives on Autopsy After the Death of a Child', Pediatric Intensive Care Nursing 7(1): 6-15.
24. Meert, K.L., Thurston, C.S. and Briller, S.H. (2005) 'The Spiritual Needs of Parents at the Time of their Child's Death in the Pediatric Intensive Care Unit and During Bereavement: a Qualitative Study', Pediatric Critical Care Medicine 6(4): 420-427.
25. Mohacsi, P., Herbertt, K. and Thompson, J. (1993) 'Donation and Retrieval of Cadaveric Organs in Australia. Accepting the Challenge', Medical Journal of Australia 158(2): 121-124.
26. Morison, R.S. (1971) 'Death: Process or Event?', Science 173(3998): 694-8.
27. Morris, J., Wilcox, T. and Frist, W. (1992) 'Pediatric Organ Donation: the Paradox of Organ Shortage Despite the Remarkable Willingness of Families to Donate', Pediatrics 89(3): 411-415.
28. Oliver, R.C. and Fallat, M.E. (1995) 'Traumatic Childhood Death: How Well do Parents Cope?', Journal of Trauma: Injury Infection and Critical Care 39(2): 303-308.
29. Oliver, R., Sturtevant, J., Scheetz, J. and Fallat, M. (2001) 'Beneficial Effects of a Hospital Bereavement Intervention Program after Traumatic Childhood Death', Journal of Trauma: Injury Infection and Critical Care 50(3): 440-448.
30. Organ Procurement and Transplantation Network (2007) 'US Data', (consulted 12 January 2008): http://www.optn.org/latestData/rptData.asp
31. Pallis, C. and Harley, D. (1996) The ABC of Brainstem Death. London: BMJ Publishing.
32. Rando, T. (1985) 'Bereaved Parents: Particular Difficulties, Unique Factors, and Treatment Issues', Social Work 30(1): 19-23.
33. Riches, G. and Dawson, P. (2000) An Intimate Loneliness: Supporting Bereaved Parents and Siblings. Buckingham: Open University Press.
34. Sharp, L.A. (2001) 'Commodified Kin: Death, Mourning, and Competing Claims on the Bodies of Organ Donors in the United States', American Anthropologist 103(1): 112-33.
35. Shemie, S.D., Doig, C., Dickens, B., Byrne, P., Wheelock, B., Rocker, G., Baker, A., Seland, T.P., Guest, C., Cass, D., Jefferson, R., Young, K. and Teitelbaum, J. on behalf of the Pediatric Reference Group and the Neonatal Reference Group (2006) 'Severe Brain Injury to Neurological Determination of Death: Canadian Forum Recommendations', Canadian Medical Association Journal 174(6): S1-S12.
36. Shemie, S.D., Pollack, M.M., Morioka, M. and Bonner, S. (2007) 'Diagnosis of Brain Death in Children', The Lancet - Neurology 6(1): 87-92.
37. Siminoff, L.A., Lawrence, R. and Arnold, R. (2003) 'Comparison of Black and White Families' Experiences and Perceptions Regarding Organ Donation Requests', Critical Care Medicine 31(1): 146-151.
38. Siminoff, L.A., Burant, C. and Youngner, S.J. (2004) 'Death and Organ Procurement: Public Beliefs and Attitudes', Social Science and Medicine 59(11): 2325-2334.
39. Streat, S. (2004) 'Clinical Review: Moral Assumptions and the Process of Organ Donation in the Intensive Care Unit', Critical Care 8(5): 382-388.
40. Truog, R. (1997) 'Is it Time to Abandon Brain Death?', Hastings Center Report 27(1): 29-37.
41. Tsai, E., Shemie, S., Cox, P.N., Furst, S., McCarthy, L. and Hebert, D. (2000) 'Organ Donation in Children: Role of the Pediatric Intensive Care Unit', Pediatric Critical Care Medicine 1(2): 156-160.
42. UK Transplant (2007) Transplant Activity in the UK: 2006-2007. Bristol: UK Tranplant.
43. Vane, D.W., Sartorelli, K.H. and Reese, J. (2001) 'Emotional Considerations and Attending Involvement Ameliorates Organ Donation in Brain Dead Pediatric Trauma Victims', Journal of Trauma-Injury Infection and Critical Care 51(2): 329-331.
44. Wijdicks, E. (2002) 'Brain Death Worldwide; Accepted Fact but No Global Consensus in Diagnostic Criteria', Neurology 58(1): 20-25.
45. Youngner, S. (1992) 'Defining Death. A Superficial and Fragile Consensus', Archives of Neurology 49(5): 570-572.
46. Youngner, S. and Arnold, R. (2001) 'Philosophical Debates about the Definition of Death: Who Cares?', Journal of Medicine and Philosophy 26(5): 527-537.
47. Youngner, S.J., Landefeld, C.S., Coulton, C.J., Juknialis, B.W. and Leary, M. (1989) '"Brain Death" and Organ Retrieval. A Cross-sectional Survey of Knowledge and Concepts among Health Professionals', Journal of the American Medical Assocation 261(15): 2205-2210.