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Semin Neurol 2015; 35(02): 169-173
DOI: 10.1055/s-0035-1547536
Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Families and Brain Death

Erwin J. O. Kompanje
1   Department of Intensive Care Medicine and Department of Ethics and Philosophy of Medicine, Erasmus MC University Medical Center, Rotterdam, The Netherlands
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Publication History

Publication Date:
03 April 2015 (online)

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Abstract

It is necessary to support the family of a patient with a progressively worsening severe acute brain injury, and to do this with the utmost understanding of their ultimate hopelessness. Any conversation starts with an explanation of the catastrophic nature of the illness, but also with establishing the point of no return. When brainstem reflexes are lost and the patient has become apneic, family members should be appropriately informed. In contrast to circulatory death, the relatives of such a patient do not see a deceased person in the traditional sense, and even the neurologic progression may not have been obvious to family members. The conversation about brain death with the close relatives is therefore different, and is more detailed than a conversation about cardiopulmonary death. In this review, a six-phase approach of communication with the relatives is proposed. Insightful snippets of personal conversations with family members are included. Communicating with family members also necessarily involves a discussion on the potential suitability for organ donation. Some suggestions on how to approach reluctant family members to accept death of their loved one are included.

Keywords

brain death - family-centered care - communication - organ transplantation
 

  • References

  • 1 Long T, Sque M, Addington-Hall J. What does a diagnosis of brain death mean to family members approached about organ donation? A review of the literature. Prog Transplant 2008; 18 (2) 118-125 , quiz 126
    CrossrefPubMedGoogle Scholar
  • 2 Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. A definition of irreversible coma. JAMA 1968; 205 (6) 337-340
    CrossrefPubMedGoogle Scholar
  • 3 Jørgensen EO. Spinal man after brain death. The unilateral extension-pronation reflex of the upper limb as an indication of brain death. Acta Neurochir (Wien) 1973; 28 (4) 259-273
    CrossrefPubMedGoogle Scholar
  • 4 Döşemeci L, Cengiz M, Yilmaz M, Ramazanoĝlu A. Frequency of spinal reflex movements in brain-dead patients. Transplant Proc 2004; 36 (1) 17-19
    CrossrefPubMedGoogle Scholar
  • 5 Spittler JF, Wortmann D, von Düring M, Gehlen W. Phenomenological diversity of spinal reflexes in brain death. Eur J Neurol 2000; 7 (3) 315-321
    CrossrefPubMedGoogle Scholar
  • 6 Franz HG, DeJong W, Wolfe SM , et al. Explaining brain death: a critical feature of the donation process. J Transpl Coord 1997; 7 (1) 14-21
    PubMedGoogle Scholar
  • 7 Burroughs TE, Hong BA, Kappel DF, Freedman BK. The stability of family decisions to consent or refuse organ donation: would you do it again?. Psychosom Med 1998; 60 (2) 156-162
    CrossrefPubMedGoogle Scholar
  • 8 DeJong W, Franz HG, Wolfe SM , et al. Requesting organ donation: an interview study of donor and nondonor families. Am J Crit Care 1998; 7 (1) 13-23
    PubMedGoogle Scholar
  • 9 Pearson IY, Bazeley P, Spencer-Plane T, Chapman JR, Robertson P. A survey of families of brain dead patients: their experiences, attitudes to organ donation and transplantation. Anaesth Intensive Care 1995; 23 (1) 88-95
    PubMedGoogle Scholar
  • 10 Paris JJ, Cummings BM, Moore Jr MP. “Brain death,” “dead,” and parental denial - the case of Jahi McMath. Camb Q Healthc Ethics 2014; 23 (4) 371-382
    CrossrefPubMedGoogle Scholar
  • 11 Siminoff LA, Mercer MB, Arnold R. Families' understanding of brain death. Prog Transplant 2003; 13 (3) 218-224
    CrossrefPubMedGoogle Scholar
  • 12 Krieger LM. A life-and-death proposal. New York Times, June 5, 1996
    PubMedGoogle Scholar
  • 13 Parkes CM, Benjamin B, Fitzgerald RG. Broken heart: a statistical study of increased mortality among widowers. BMJ 1969; 1 (5646) 740-743
    CrossrefPubMedGoogle Scholar
  • 14 Trzcińska M, Woderska A, Włodarczyk Z. Psychological principles in regard to the interview with the deceased donor's family. Anaesthesiol Intensive Ther 2014; 46 (3) 200-207
    CrossrefPubMedGoogle Scholar
  • 15 Luskin RS, Glazier AK, Delmonico FL. Organ donation and dual advocacy. N Engl J Med 2008; 358 (12) 1297-1298
    CrossrefPubMedGoogle Scholar
  • 16 Kompanje EJO, de Groot YJ, Bakker J, Ijzermans JNM. A national multicenter trial on family presence during brain death determination: the FABRA study. Neurocrit Care 2012; 17 (2) 301-308
    CrossrefPubMedGoogle Scholar
  • 17 Doran M. The presence of family during brain stem death testing. Intensive Crit Care Nurs 2004; 20 (1) 32-37
    CrossrefPubMedGoogle Scholar
  • 18 Doran M. The presence of family during brain stem death testing. Intensive Crit Care Nurs 2004; 20 (2) 87-92
    CrossrefPubMedGoogle Scholar
  • 19 Davidson JE. Improving the family experience through presence at brain death evaluation. Crit Care Med 2014; 42 (4) 1002-1003
    CrossrefPubMedGoogle Scholar
  • 20 Tawil I, Brown LH, Comfort D , et al. Family presence during brain death evaluation: a randomized controlled trial. Crit Care Med 2014; 42 (4) 934-942
    CrossrefPubMedGoogle Scholar
  • 21 Pugh J, Clarke L, Gray J, Haveman J, Lawler P, Bonner S. Presence of relatives during testing for brain stem death: questionnaire study. BMJ 2000; 321 (7275) 1505-1506
    CrossrefPubMedGoogle Scholar
  • 22 Mackler AL. Respecting bodies and saving lives: Jewish perspectives on organ donation and transplantation. Camb Q Healthc Ethics 2001; 10 (4) 420-429
    CrossrefPubMedGoogle Scholar
  • 23 Rady MY, Verheijde JL. Brain-dead patients are not cadavers: the need to revise the definition of death in Muslim communities. HEC Forum 2013; 25 (1) 25-45
    CrossrefPubMedGoogle Scholar
  • 24 Segal E. Religious objections to brain death. J Crit Care 2014; 29 (5) 875-877
    CrossrefPubMedGoogle Scholar
  • 25 Long T, Sque M, Addington-Hall J. Conflict rationalisation: how family members cope with a diagnosis of brain stem death. Soc Sci Med 2008; 67 (2) 253-261
    CrossrefPubMedGoogle Scholar
  • 26 Berntzen H, Bjørk IT. Experiences of donor families after consenting to organ donation: a qualitative study. Intensive Crit Care Nurs 2014; 30 (5) 266-274
    CrossrefPubMedGoogle Scholar