By Seema Shah
In my last post, I discussed my view that brain death is not the same as death, but is a status legal fiction to allow organ donation when it is legally and ethically acceptable to treat individuals as dead. There are some important and unresolved questions in the debate on brain death and organ transplantation. In particular, does the public know the truth about brain death? If not, is it ethically acceptable to rely on the consent given by organ donors and their families? Although several surveys have been done on public attitudes towards brain death and organ transplantation, there is a compelling need for more and better data to determine what members of the informed public believe about the relationship between brain death, death, and vital organ transplantation.
Michael Nair-Collins wrote an interesting article recently in the Kennedy Institute of Ethics Journal entitled “Brain death, paternalism, and the language of ‘death.’” He argues that the lack of transparency in obtaining consent for organ donation calls into question whether donors and their family members give valid consent. For instance, he notes that the Department of Health and Human Services website states the following: “Patients who are brain dead have no brain activity and cannot breathe on their own. Brain death is not coma. Brain death is death.” Yet we know that brain dead individuals do continue to have some brain activity, including the secretion of vasopressin, and as discussed in my last post, there is good reason to distinguish brain death from a more traditional, biological conception of death. Nair-Collins raises important concerns about policy makers failing to inform the public with accurate information about brain death in order to try to increase rates of organ transplantation.
What Nair-Collins fails to acknowledge is that by focusing on the information about organ transplantation that policy-makers, doctors, clerks at the DMV, and all those involved in getting consent from potential organ donors, he is only looking at one piece of the puzzle. Those who have family members who are brain dead have direct access to evidence about what brain death means. They can see for themselves that, with assistance from modern technology, brain dead individuals are warm to the touch, have hearts that beat, lungs that inflate, and in some cases, even have bodies capable of passing through puberty or gestating growing fetuses. No matter what family members are told about brain death, they have the ability to perceive with their own senses the difference between brain death and the conventional image of a dead person as a lifeless corpse. Many members of the public may also be able to see that although brain dead individuals are not actually dead, they are “as good as dead” for the purposes of organ transplantation.As I mentioned in my last post, with Kenny Kasper and Frank Miller, I am currently engaged in a project exploring the empirical literature on brain death. Members of the public demonstrate a great deal of confusion about brain death. For instance, one survey showed that substantial proportions of people believe that brain dead individuals can hear, which is obviously untrue. Moreover, studies show that caretakers sometimes understand that their loved ones are dead on an intellectual level, but not on an emotional one. This suggests that when confronted with a brain dead individual who does not look like a corpse, family members may intuitively distinguish brain death from a more traditional and biological conception of death.
Consider media reports from the cases of Susan Torres, a pregnant woman who experienced brain death but was maintained on a ventilator and continued to gestate her fetus. Her brother-in-law described the situation poignantly: “We know that by some legal standards she’s considered dead already, but we don’t believe it. All you have to do is spend any time in the room with Susan, her doctors, her family or [her husband]. She’s the strongest person in that room.” Newspaper headlines about that case and other brain dead pregnant women often state that a woman who is brain dead is being “kept alive” to try and save the fetus—which would seem bizarre if everyone accepted the dominant legal and medical view that brain death is the same as death. How can a person who is already dead be kept alive?
Anecdotal evidence like this suggests we cannot assume, as Nair-Collins does, that when families are asked to consent for their loved ones to donate organs after brain death, their consent is invalid because they are not told the truth about brain death. It is at least possible that people can give valid consent even in cases of defective disclosure of the facts. We might of course think that the people responsible for defective disclosure are doing something wrong, but we cannot assume that the person asked to give informed consent was misled. Instead, we need data to determine what people believe when they are told that brain death is biological death, but can see for themselves that the two states are different in many ways, and perhaps that they are similar in the ways that matter for deciding when it would be acceptable to stop therapy and permit organ donation.
Citations:
Siminoff LA, Burant C, Youngner SJ. Death and organ procurement: public beliefs and attitudes. Soc Sci Med. 2004 Dec;59(11):2325-34.
Long T, Sque M, Addington-Hall J. Conflict rationalisation: how family members cope with a diagnosis of brain stem death. Soc Sci Med. 2008 Jul;67(2):253-61.
Siminoff LA, Mercer MB, Arnold R. Families’ understanding of brain death. Prog Transplant. 2003 Sep;13(3):218-24.