Thinking about brain death

By Seema Shah

It astonishes me how many people do not realize the controversial nature of “brain death” and the fact that it is not the same as death. There is a substantial body of literature showing that brain death is not the equivalent of death. The President’s Council on Bioethics issued a white paper in 2008 acknowledging the deficiencies with our current approaches to determining death. The literature on the topic is fascinating—some brain dead individuals have gestated babies successfully to viability and gone through puberty. Many brain dead individuals can heal wounds, regulate their body temperatures, and persist on ventilators for many years. (If you are unfamiliar with this literature and want to read further, see the citations provided below.)

Frank Miller and I have argued that best the way to think about the status quo is that brain death is a status legal fiction, much like the legal construct that a corporation is a person. A corporation is similar enough to a person that it is convenient to treat corporations as persons under the law, rather than writing an entirely new body of law meant to apply to corporations alone. We have argued that brain death is similar to death—Frank Miller and Bob Truog express this by saying that a person who is brain dead is “as good as dead.” For this reason, we can ethically and legally treat the two states in the same way for the purposes of determining death and allowing vital organ transplantation.

There are many open and interesting questions about brain death that I will be exploring on this blog for the next few weeks. Michael Nair-Collins has a recent article in the Kennedy Institute of Ethics Journal that argues that the current approach to determining death in the U.S. is paternalistic and, presumably, unjustified. He cites as evidence the kinds of information that are shared with people deciding whether to become organ donors. But is this true, or is there evidence that the public is able to distinguish between brain death and death? Kenneth Kasper, Frank Miller, and I are investigating this at the moment, and we are finding some surprising answers in the literature.

Another issue is whether the legal fiction of brain death should extend to research. What kinds of research would be acceptable to perform on brain dead individuals? Is it the same as what we would permit with research on cadavers, or is it different in some way?

Finally, given that legal fictions are meant to be a temporary solution (the “scaffolding” of the law, in Lon Fuller’s terms), what research needs to be done to move towards greater transparency in vital organ donation?

Citations for further reading:

    6 thoughts on “Thinking about brain death

    1. I think that first it is necessary to define death prior to claiming that brain death is not death. If we define death as the irreversible cessation of consciousness and brainstem function including apnea, then those who fulfill brain death criteria are indeed dead. Truog and Miller have define life as the presence of integrated function. However, they haven’t exactly defined integrated function. What tests are necessary to know that it is present? They have not presented a three part categorization(per Bernat and later Youngner) starting with concept and ending with specific tests to know if what is presented as the concept of life is actually present or absent. In fact, to my knowledge, no one has. Dr. Shewmon has come the closest in his presentation to the Vatican, and even there he fails to give a precise definition of integrated function, and fails to set out precise testing to know if it is gone or not. In addition, as pointed out by John Lizza, the concept of integrated function as life fails to cohere with our societal idea that identity goes with a functioning brain(see ‘Where’s Waldo). In addition, the concept of integrated function fails to take into the transplant of multiple organs. If multiple organs are transplanted from one person to another, does the recipient take on the identity of the donor because the donor’s integrated function persists? All these questions are unanswered and unaddressed. I suggest that the true fiction is that integrated function is an actual functioning definition of death that can be applied in real life. It is a fuzzy concept of life, not a defining line between life and death.

      Noam Stadlan, MD
      Asst. Prof. Division of Neurosurgery
      U. of Chicago
      NorthShore University Healthcare system

    2. We had to go through the agonising Brain Death of our eldest son in 1993,he was 25yrs old and we were asked about donating his organs there and then.
      I honestly don’t believe any parent should be asked at that time to donate their child’s organs.
      If the accident had happened now, in 2013 he would have been put into an induced coma, and who knows he could have been here with us now.

      • Dear Ms. King,
        I am very sorry for your loss. If it is any consolation, someone determined to be brain dead 1993 would also be determined to be brain dead now. The criteria and process are the same. And contrary to what has been written in many places, the majority of the medical establishment and the major religions do consider that person dead, without any qualifications. Drug induced coma does not help those who are brain dead. It is very difficult to support the functions in the bodies of those who are brain dead, and therefore the window for organ donation is usually measured in hours to days. Therefore the decision whether to donate or not has to be made quickly. It is obviously very difficult for the family, but this is the only opportunity for those who wish to donate to do so.

      • Ms. King,
        I am also very sorry to hear about your son. I am not a physician, but I do know that the way we determine legally whether someone is brain dead involves finding out that they have permanently lost the ability to interact meaningfully with the world. Given that the things we value about people are lost forever once they are brain dead, there are lots of reasons to think it is ethical to allow organ transplantation from brain dead patients that can help save the lives of many people. Your experience demonstrates how hard the process can be for families, and why we really need better public education about brain death and organ transplantation. It is really unfortunate that there is extra and unnecessary burden on families to have to learn about the process in an already difficult time. I hope it did not take away from the feeling that you and your family did something truly noble by helping save the lives of others.

    3. Great Post, Seema. A lot of complex and interesting issues. Most of them, in my view, boil down to the question whether death is a fact (which I think is not, although I would have to qualify that a bit). This is why your piece on death and legal fictions (which I enjoyed) is so pertinent. I would be, however, more cautious in the use of the term, particularly if you link it to Fuller’s idea about the “temporary” character of legal fictions. As opposed to death, we don’t use the legal fiction of treating corporations as if they were persons awaiting to discover their “true nature”. And yet, we want to determine death and therefore bury or cremate people if and only if they are dead, and we struggle to find the best clinical criteria to ensure that.
      The question about death’s occurrence is different from the question: “when is it right to remove organs from this human organism?” And I think that in regard to this second issue you, and Truog and Miller have done a great job in advocating that, for organ donation purposes, we should move forward in our current standards even if that implies abandoning the dead donor rule. What matters is clinical conditions (devastating prognosis, clinical trajectory towards imminent death, etc.), and, above all, consent. If we also think that we are allowing the individual to be sovereign in the anticipation of his own death because great social benefits might obtain (the saving of patients waiting for an organ) the same would have to apply to research, right? I know, of course, there are important questions concerning dignity and the legitimate uses of cadavers (for these issues Michael Rosen’s “Dignity. Its history and meaning” is particularly illuminating) which I am sure you will have to tackle in those forthcoming posts that I am eager to read.

      Pd. I, along with a colleague of mine (Alicia Pérez Blanco) are also conducting a survey of the medical profession in Spain – particularly intensivists and transplantation surgeons- trying to know whether it will be acceptable to abandon the so-called “no touch period” in donation after circulatory death and if we can leave to patients the possibility of waiving that observation period in case they want to be organ donors no matter what.