As good as dead? The ethical complexities of declaring someone dead

It is often said that nothing is certain in life except death and taxes. And while it is certain we will all die, the definition of death is much murkier.

Dr. Trevor Bibler, assistant professor at Baylor College of Medicine and clinical ethics consultant at Houston Methodist Hospital, Claire Horner, J.D., M.A., assistant professor at Baylor College of Medicine and clinical ethics consultant at Baylor St. Luke’s Medical Center, and Dr. Mark Hobeika, assistant professor of surgery, Weill Cornell Medical College and transplant surgeon at Houston Methodist Hospital, are well versed in this topic. They have sat at the bedside with patients and families dealing with ethical issues surrounding end-of-life care.

They each have reviewed the literature and written on the topic (a sample of their work can be found below).

• Determination of Brain Death
• Ethics and Brain Death in Pediatrics: Recent Controversy and Practical Suggestions
• Ethical Analysis and Beyond! How Christian Anthropology and the Concept of Dignity Can Also Address Moral Distress in End-of-Life Care
• United States donation after circulatory death liver transplantation is driven by a few high-utilization transplant centers

In the following Q&A they discuss common misconceptions and controversies related to death.

When is a patient in the United States declared dead?

Dr. Bibler: In the early 1980s, the Uniform Determination of Death Act defined death as either “(1) [the] irreversible cessation of circulatory and respiratory functions or (2) [the] irreversible cessation of all functions of the entire brain, including the brain stem.” This act was adopted by all 50 states in the United States in the following years, with some modifications.

Can someone be falsely declared dead? Has this happened?

Prof. Horner: There have always been rare stories throughout history of patients waking up in the morgue or at the funeral, having been alive but with vital signs that were not detected by physicians. However, with modern medicine and our ability to monitor heart rate, brain activity, respiration and other biological markers, declarations of death aren’t made without a good deal of certainty.

In a declaration of brain death, for example, a series of tests are performed at the time of suspected brain death, and in some cases are performed again a few hours later, to ensure that the patient’s body has been comprehensively evaluated for any signs of life. However, there is some variability around the world on which tests are used and what criteria are met.

Recent stories in the media about individuals who have been declared brain dead being maintained on machines for months afterward have not usually been about a person coming back “alive” but about a disagreement about whether all of the criteria were met for the brain death diagnosis in the first place, and whether cessation of brain function should properly be called death in the first place.

Brain death differs from traditional circulatory death; why does this matter?

Prof. Horner: With traditional circulatory death, it is obvious to observers that the person has died. The chest stops moving, rigor mortis sets in, and the patient’s body begins to decay because blood is no longer circulating.

In brain death, however, bodies are still maintained on machines that breathe for them and maintain circulation. This person’s chest is still moving, their body looks the same, and it can be hard for us to look at them and think of them as dead. The death of the brain means the end of the body as an integrated whole – without the ventilator, the lungs would not move and the lack of oxygen would stop the other organs from functioning. If bodies looked the same after brain death as they do after circulatory death, there would be much less controversy about it.

As technology continues to advance, do you think this will or should alter the definition of death?

Dr. Bibler: Yes. I see no reason to think our conceptions of death won’t evolve with changes in technology. Arguably, the entire reason professional medicine decided to distinguish the cardio-pulmonary from neurological conceptions of death is because of technological advances.

First, according to the popular story, there was a problem: medicine had advanced to the point where people with devastating neurological injuries could remain alive for days, months, or even years, with permanent respiratory support and medically administered nutrition and hydration. Their hearts were beating, but professionals were skeptical that continued physiological existence was appropriate for medicine. The 1968 the Harvard ad hoc committee on brain death explicitly said, that their “primary purpose is to define irreversible coma as a new criterion for death.” They did not say they were appealing to an old idea, but rather, a new one because of technological advances.

Second, the technologies involved in organ transplantation also played a role in these early definitions. Returning to the Harvard committee, they state they are motivated by the need to update “obsolete criteria for the definition of death” because the old cardiopulmonary criteria “can lead to controversy in obtaining organs for transplantation.” In other words, without a new conception of death, transplant surgeons may be accused of procuring organs from living patients rather than decedents.

Without either the technological advances in life-sustaining technologies, there may have never arisen a desire to create a new way of separating the living from the dead.

What are the main bioethical controversies surrounding the topic of legal death?

Dr. Bibler: One area is the definition of death. Some are confident that with agreed upon definitions of death there will be additional clarity on the ethical and professional aspects of medicine.

Another in clinical medicine is the scope of patient or family preferences when testing for and determining death. As mentioned above, declaring death by neurological criteria requires examination. Should family have the authority to say, “No. You can’t examine the patient to test whether or not they meet the criteria”? Should families (and often their religious communities) have the authority to refuse to accept the findings of the exam? If they refuse, then what? So, I believe medicine’s response to families who object to either the exam or the determination will be another area of continued controversy, even if the law provides a definition that many agree upon.

Want to learn more about this topic? Check out our upcoming Grand Rounds, “Maximizing Life after Death: Ethical Considerations when Continuing Somatic Support for Others,” which takes place Dec. 15 at 5 p.m. CT.  View flyer for more details.

-By Clarice Jacobson, senior business strategy and development associate, Center for Medical Ethics and Health Policy at Baylor College of Medicine