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Understanding the implications of brain death for a patient's recovery may help families decide about donating organs

The medical community generally defines death as brain death. A family's understanding of brain death affects their decision to donate the organs of hospitalized loved ones, finds a study supported by the Agency for Healthcare Research and Quality (HS08209). Families who accepted that their loved one was dead when informed the patient was brain dead were more likely to donate their loved one's organs than those who did not consider the patient dead until mechanical support was turned off and the heart stopped.

The study was undertaken to examine factors related to families' understanding of brain death and how those factors affect the families' decisions about organ donation. The study population consisted of 403 families of organ donor-eligible patients at nine trauma hospitals who reported that someone at the hospital told them the patient was brain dead. Laura A. Siminoff, Ph.D., of Case Western Reserve University, and her colleagues interviewed family decisionmakers and health care providers who spoke with the families about organ donation. The researchers asked family members about their awareness of brain-death testing procedures, their understanding of brain death, and their organ donation decisions.

Most families (96 percent) were told that their family member was brain dead, but only 28 percent were able to provide a completely correct definition of brain death. For example, many confused brain death with coma (a state from which a person could emerge). Overall, 63.5 percent of the families first considered the patient dead when they were told the patient was brain dead, whereas 21.8 percent first considered the patient dead when the machines were turned off and the heart stopped. Nearly 60 percent of families made statements indicating that they thought the patient was still alive even after being told he or she was brain dead.

In conclusion, the researchers note that the concept of brain death is confusing both to health care professionals and the public. In this study, people were willing to donate organs despite neither understanding brain death nor equating brain death with absolute death. The researchers suggest that rather than educating families regarding brain death per se, it might be more useful to focus on the implications of the diagnosis for the patient's recovery.

See "Families' understanding of brain death," by Dr. Siminoff, Mary Beth Mercer, M.P.H., and Robert Arnold, M.D., in the September 2003 Progress in Transplantation 13, pp. 218-224.

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