To the very last breath
by Heather Zeiger | July 16, 2018
Death seems so straightforward. The body is alive and then it isn’t. In most cases it is clear when someone has died. However, ambiguous cases bring up the same questions that doctors and ethicists were asking in the 1960s when mechanical ventilation became possible: What does it mean for a person to be warm to the touch, breathing with assistance, yet brain-dead?
To be sure, ambiguous cases are not the norm, including brain death while a person is on a ventilator. I had a clinical ethics professor, who has had to declare brain death, tell our class that in his experience whole brain death is abundantly clear. It is rarely ambiguous.
Nonetheless, every once in a while the media will highlight a person who was thought to be dead, but then wakes up. For example, earlier this year there was the odd case of Gonzalo Montoya Jimenez. Gonzalo, a Spanish prisoner whose body was marked out for an autopsy incision, started snoring while he was lying on the table. Obviously, whatever criteria were used to determine whether he was alive or dead were not adequate in his case.
By contrast, there was the case of a Trenton McKinley, a 13-year-old boy from the US state of Alabama. He was involved in an accident in which a trailer rolled onto his head. His parents and doctors thought he had died on the operating table and his mother had even signed the organ donation forms. The doctors were going to conduct a final EEG test to declare time of death before removing him from life support when the boy’s vitals returned. He has regained the ability to walk, talk, and do math problems. In this case, the medical standard of conducting a final EEG test, which is typically done after a 24-hour waiting period, proved beneficial.
The fact that there can be cases like Trenton’s where death is uncertain is why the Uniform Determination of Death Act was written and why, several years later, additional criteria were laid out for declaring pediatric death. The legal definition of death, as specified by the legislation, includes both cardiopulmonary death (heart and lungs stop working) and whole brain death (cerebrum, cerebellum, and brain stem stop functioning) as determined by customary medical procedures. Studies have shown that in most cases children over the age of 2 years old only require one EEG with a 12 to 24-hour observation period as adequate for determining whole brain death.
Concepts of death
Ronald Munson, in his textbook on bioethics, describes four concepts of death, each with its own set of criteria and its own controversies: traditional, whole-brain, higher-brain, and personhood.
The traditional definition of death is cardiopulmonary death, or the cessation of breathing and blood circulation. This was the prevailing concept of death until the advent of mechanical respiration. Some religious groups only accept cardiopulmonary death as a valid determination of death.
Whole brain death occurs when there a permanent loss of brain function. This includes the higher brain, which is the cerebrum and cerebellum, and the lower brain, which is the brain stem. The cerebrum is associated with consciousness and the cerebellum with voluntary muscle activity. The brain stem is associated with involuntary activities such as breathing. Diagnosis relies on measuring brain activity using an EEG or imaging, which can pose problems when there is residual electrical activity in cells. Some ambiguous cases rely on the doctor’s ability to interpret whether the EEG is reading noise or actual brain activity.
Higher brain death is a concept of death that is based on the permanent loss of function of the cerebrum and cerebellum, but not the brain stem. This would include people in a persistent vegetative state or a permanent coma. Terry Schiavo and the Karen Ann Quinlan are examples of patients who suffered loss of function of the higher brain but maintained some brain stem function.
Finally, the personhood concept of death is related to a loss of identity or personhood. This is based on the loss of certain functions that are considered essential to being human. However, what those functions are or what priority we should place on certain functions is debatable and often culturally relative. Unlike the other three concepts of death, this is not based on physical data, but on how a person functions.
All US states accept both the traditional concept of death and whole brain death as valid definitions of death although New York and New Jersey allow religious exemptions for those whose faith only permits cardiopulmonary death. Higher brain death and the personhood concept of death are more controversial because they hinge upon arbitrary criteria. (For a more nuanced discussion on Judeo-Christian views, see “The higher-brain concept of death: A Christian theological appraisal” Ethics & Medicine 33:3, 2017.)
This brings us to the confusing case of Jahi McMath, a pre-teen girl who sustained severe brain damage during routine tonsil surgery. For five years Jahi was legally dead in the state of California but not in New Jersey where she was kept on life support. Jahi’s case is troubling because she clearly met all of the criteria for whole brain death, yet her body did not deteriorate as is typical in whole brain death. In fact, she went through puberty. Furthermore, Jahi’s mother reported that she responded to people when they talked to her. Others outside of the family reported seeing her respond to commands to touch her index finger to her thumb. (See Wesley Smith’s account after visiting Jahi McMath here.)
As I was working on this article, Jahi died from liver failure. However, her parents continue to pursue legal proceeding to ensure that the death certificate says June 22, 2018 rather than the date on the California death certificate. They are also suing for wrongful death. Her case is still of interest because she did not follow the normal course after whole brain death. An autopsy may clarify to what extent her brain was damaged.
History of brain death
The history of brain death is inextricably intertwined with advances in medical technology. As Albert Jonsen points out in his book The Birth of Bioethics, with the advent of the respirator came two important questions: How was clinical death to be determined, and when should life support be withdrawn? These questions were particularly important to organ transplantation surgeons.
Furthermore, as this brief timeline shows, medical experts agreed that the standards for brain death should be different for children, even though age-specific standards were not written until many years after the Uniform Declaration of Death Act.
1954 – The first successful human organ transplant (a kidney)
1967 – The first successful liver transplant, isolated pancreas transplant, and heart transplant
1968 – The Ad Hoc Committee of the Harvard Medical School defined brain death as a new criterion for death. It defined an irreversible coma as “unresponsiveness to external stimuli, absent movements or breathing, absent reflexes, and a flat EEG”.
1975 – The American Neurological Association, after reviewing the Harvard report, said that this criterion may not be adequate for children under 5 years old.
1981 – The Uniform Determination of Death Act defined death as either cessation of cardiopulmonary function or of total brain function. Notably, total brain death includes the cerebral cortex and brain stem, as opposed to only the loss of function in the cerebral cortex. It did not have age-specific criterion, but did say that doctors should exhibit caution when determining brain death for a child under 5 years old.
1987 – A task force for setting guidelines for brain death in children was assembled.
1995 – The guidelines for brain death in adults were revised without new recommendations for children.
2011-2012 – Publication of guidelines for determining brain death in children, with specific guidelines for ages 7 days to 2 months, 2 months to 1 year, and over 1 year.
Technology, culture, and death
A recent article in The Economist on brain death points out that it is as much a cultural phenomenon as a physiological one. Countries that have the technology to maintain life support are typically the ones that deal with brain death. In other countries, cardiopulmonary death is often a preferred marker for death, if for no other reason than lack of resources to keep a brain-dead person alive. However, even in wealthy countries medical resources are stretched thin. Some people see it as a waste of resources to keep a brain dead person’s circulatory and respiratory system functioning.
Western cultures tend to value the brain as the most important organ because it is the conduit to the mind. In contemporary Western thinking the mind and brain are separate and distinct and consciousness is what sets human beings apart from other animals. This kind of mind and body dualism is most apparent in the higher brain death and personhood concepts of death. By contrast, countries like Japan are reluctant to use brain death as a criterion for death because they see the whole body as important for human identity. Consequently, people from these cultures are also less likely to be organ donors than Westerners.
Part of the original impetus behind including brain death as a criterion for death was the procurement of organs, and it is because of this history that many people feel uneasy about brain death as a criterion for death. All human beings have inherent dignity, but when it comes to the need for organs, it is too easy to slip into thinking that some lives are more worthy of life than others. After the publication of the Harvard Report on brain death, philosophers like Hans Jonas and Paul Ramsey lauded the idea of clarifying what it means to be brain dead, but cautioned against a utilitarian approach to brain death that is based on the need for organs.
One way this plays out in the clinic is when resuscitation has failed. There are cases of adults who have experienced “delayed return of spontaneous circulation”, the so-called Lazarus syndrome. These people are thought to be dead after heart failure. CPR does not revive them – but suddenly their heart begins pumping again. This typically happens very soon after CPR has stopped and may be due to delays in the body’s response to adrenaline and resuscitation. Experts have suggested monitoring a patient for at least ten minutes before officially declaring death in the event that spontaneous circulation occurs. However, the best time to retrieve organs is two to five minutes after blood flow has stopped. As a result, doctors are not currently required to monitor patients for ten minutes before declaring death.
Many of the cases that have appeared in the media call into question the criteria for brain death. Some doctors are frustrated that these stories misinform the public about whole brain death, which can often be definitively determined. But the exceptional cases still shine a light on some needed humility in this field. The brain is complex and particularly in the case of the developing brain, there is much that we do not know. Additionally, there is an uneasy tension between brain death and organ donation. Many people want to be assured that hospitals will prioritize caring for them as patients before treating them as potential donors.
Heather Zeiger is a freelance science writer with advanced degrees in chemistry and bioethics. She writes on the intersection of science, culture, and technology.
Jonsen, Albert R. The Birth of Bioethics, Oxford University Press, 1998
Munson, Ronald Intervention and Reflection: Basic Issues in Medical Ethics, 8th ed. Thomson, 2008.
Orr, Robert D., MD, CM Medical Ethics and the Faith Factor: A Handbook for Clergy and Health-Care Professionals William B. Eerdmans Publishing Company, 2009.