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Families' Understanding of Brain Death

supply of transplantable organs. In the United States, the next of kin makes the donation decision after the patient’s death. Donors have usually been declared dead based on neurological criteria. There is a consensus in the medical and legal literature regarding the determination of death based on neurological criteria in the United States. However, previous studies reveal that lay people often misunderstand the concept of brain death. Using a word-associative method, researchers found that the term “brain dead” was interpreted differently than “dead.” For example, using dead instead of brain dead increased the percentages of those who recommended donation. Studies of families who made a donation decision have likewise reported confusion about what the diagnosis of brain death means. In one study of 99 families who consented to donation, 14 of the families had no clear understanding of brain death, whereas 80 families indicated they did understand the concept (no information is provided about the other 5 families). However, the response rate was 51% (99 of 196), making it difficult to estimate the number of families who may not have understood brain death. Finally, in one study, 52% of respondents who refused donation (n=62) scored 2 or 3 on a brain-death knowledge index (consisting of 3 brain-death knowledge items) compared with about 80% of respondents who donated (n=102). The authors concluded that families who refused donation had less understanding of brain death than families who consented. Unfortunately, this small study did not look at the influence of the multitude of factors affecting the decision to donate. The analysis presented here examines data from a study of families who were asked to donate a family member’s organs. We examine the following: (1) if fam ilies who were asked to donate a loved one’s organs under stood the concept of brain death; (2) whether understand ing is correlated with a belief that their family member is dead; and (3) whether, after controlling for covariates, understanding the term “brain death” influenced the decision to donate.