In December 2013, 13-year-old Jahi McMath entered Children’s Hospital in Oakland, California, for serious throat surgery to relieve her sleep apnea. She survived the surgery without incident, even enjoying a Popsicle after awakening from anesthesia.
Then came a terrible complication: Jahi began bleeding profusely and suffered a cardiac arrest. It took many minutes to restore her heartbeat. Too late: Jahi was later declared “brain-dead.” Doctors informed Jahi’s mother that she had died and that they would soon remove all medical technology sustaining her.1
Jahi’s family protested. She was still warm, they noted. Because of medical machinery, air was still flowing into her lungs, and her heart was still beating, pulsing blood through her arteries. Surely, they pleaded in anguish, she is still alive.
With hospital administrators and doctors adamant that, tragically, Jahi was dead—and would be so treated—the family went public. The story exploded into international headlines and bitter litigation ensued.
Alameda County Superior Court Judge Evelio Grillo appointed a Stanford University Medical School neurologist to render an independent assessment. When this well-respected physician also determined that Jahi was brain-dead—the third to so conclude—Grillo declared her legally deceased and Alameda County issued a death certificate.2
But the judge did not force her off of medical support—as he could have under California law.3 Rather, he ultimately arm-twisted the parties into a settlement under which the hospital released Jahi to the Alameda County Coroner and thence to her family—still on the ventilator. As of this writing, Jahi is being maintained at an undisclosed location.4
At about the same time, a similar tragedy in Texas made the news. Marlise Muñoz, 14 weeks pregnant, collapsed. She received CPR and was rushed to the hospital but never regained consciousness. When she was declared brain dead, her husband Erick requested that her life support be terminated so that the family could make final arrangements.
But John Peter Smith Hospital administrators refused. It wasn’t that her doctors disagreed that Marlise was dead. But they worried that complying with the request would violate a Texas statute that states:
A person may not withdraw or withhold life-sustaining treatment under this subchapter from a pregnant patient.5
Erick sued, claiming that Marlise would not have wanted her body maintained, that her body was deteriorating—as usually happens in such cases—that tests showed the fetus was irremediably damaged by the mother’s death, and that the statute did not apply in any event since, as a deceased person, Marlise was not a “patient.”
A judge agreed, ruling that the law indeed was not applicable to the facts of the case “because Mrs. Muñoz is dead.”6 The hospital was ordered to remove medical intervention, which came to pass, even though by then the fetus was 22 weeks or so along.
The white-hot McMath and Muñoz controversies reignited public interest in a story that had broken in the Daily Mail in November 2013, but which had received little attention at the time. Hungarian doctors reported the birth of a healthy baby from a brain-dead mother:
A baby which was 15 weeks old when its mother was declared brain-dead was delivered by Caesarean section at 27 weeks, after doctors kept the mother alive on life support. The Hungarian doctors who delivered the baby in July believe the birth is one of only three such cases in the world.
The above reporting made a subtle mistake—often seen in stories such as this—which adds to the public’s confusion about brain death. As will be described in more detail below, if the Hungarian mother was actually brain-dead, the doctors did not keep her “alive,” but rather, kept her organ systems functioning long enough for the baby to be delivered. As we shall see, at least legally, that is a distinction with a profound difference.
Back to the story:
In the spring, she had been rushed to hospital, operated on but was declared brain-dead. She was kept on life support and doctors were able to see through an ultrasound that the foetus was moving. “In the first two days we struggled to save the mother’s life and it was proven . . . that circulation and functions stopped,” said Dr. Bela Fulesdi, president of the University of Debrecen Medical and Health Science Centre.
The baby was delivered when, like that of Muñoz, the mother’s body began to deteriorate:
While they were hoping to keep the baby in the womb as long as possible, in the 27th week, the woman’s circulation became unstable and doctors decided to deliver the baby because the womb was no longer safe.7
The confusion and public debate that erupted around these “brain death” cases shows how little the concept is understood by most people and the media. It also raises important scientific—and ethical—questions: Is brain-dead really dead? Why do the bodies of brain-dead people remain viable for a time? Can I decide that I don’t want my own death to ever be so declared?
What is “Brain Death?”8
The term “brain death” was coined by French physicians (coma dépassé) in 1959, in recognition of how the “profundity of coma, apnea [cessation of breathing] and unresponsiveness exhibited by patients with destroyed cerebral hemispheres and brain stems differed fundamentally from previously described forms of coma.”9
The condition’s existence was an unexpected consequence of the technological revolution in medicine that transformed health care in the middle of the last century. Indeed, because a person who is brain-dead cannot breathe, the condition would not exist at all but for the development of the ventilator and other forms of medical technology that have saved the lives of so many desperately ill and injured people. For some of these patients, high-tech medicine was the road that led to a full recovery. For others, ongoing high-tech life-sustaining treatment is necessary to prevent death. In contrast, for a relative few—the most catastrophically injured or ill—the functioning of the whole brain was utterly destroyed by the underlying disease or injury, but the medical machinery kept other body systems viable for a time. It is this latter group that has come to be known as brain-dead.
The concept of brain death has become inextricably linked with organ donation. Into the early 1960s, most organ transplants were limited to single kidneys, liver grafts taken from living relatives, or kidneys removed from donors whose hearts had stopped beating. At about this time, a few donors belonged to the class we would today consider brain-dead. But because there was not yet an accepted understanding of brain death as constituting “death,” medical interventions were ceased for such patients so that cardiac arrest would ensue before procurement.
Then, in 1967, the South African physician Dr. Christiaan Barnard electrified the world with a heart transplant taken from a donor declared brain-dead, a concept then accepted in South Africa. However, even Dr. Barnard did not procure the heart he transplanted until after removing the medical machines from the body and waiting for cardiac arrest.10
The question of whether “brain death” was a valid concept moved swiftly to the forefront of medicine, pregnant with possibilities for saving the lives of those needing organ transplants. At that time, organ transplant medicine lacked today’s capability to substantially delay the onset of organ decay in those declared dead by standard means (irreversible cessation of cardio-pulmonary function, or “heart death”). As a consequence, many donated organs were rendered unusable.
But if brain death could be accepted as a biologically legitimate and verifiable condition, the problem of decay could be reduced dramatically, since the donor’s organs would remain in the body where they could be kept healthy by the medically maintained circulation of blood until the very moment of procurement. That could save many lives among potential organ recipients that were being lost because organs became nonviable.
Organ donation was not the only pressing issue for which the concept of brain death potentially provided a solution. These were the years when many doctors were very reluctant to remove life support from living patients. However, there has never been an obligation in medicine to treat dead persons. More pragmatically, if brain death were accepted as legal death, no doctor could face criminal charges for turning off the ventilator of a dead patient—rarely an issue today but a significant fear at the time. Thus, when a committee was convened at Harvard University in 1968 to determine the criteria that could legitimately be used to determine when a human being had died, investigating brain death was high on the agenda.
The Harvard Committee Report concluded that brain death was a physiologically and ethically sound means of determining death, and that objective diagnostic criteria could be developed for establishing when it had occurred. This new method to determine death won quick approval in many segments of society, including among widely respected representatives of religious groups (then a more important societal force in public policy matters than now), as well as by medical and legal professional organizations.
Assent was not, however, unanimous. A minority of commenters worried that brain death was simply a utilitarian expedient to permit the exploitation of profoundly disabled people for their organs. (Some, as we shall see, still think that.) But these voices carried little sway.
In 1970, Kansas became the first state to formally include brain death in its statute defining death; the rest of the nation and then most of the Western world quickly followed suit. Because organs procured from brain-dead donors were much more likely to function properly after transplant, the use of heart-dead donors fell substantially out of favor in transplant medicine until some 20 years later, when it was revived—a matter not without its own controversies, the details of which are beyond our scope here.11
The Uniform Determination of Death Act—which has essentially been adopted in all 50 states—defined brain death as follows:
An individual who has sustained . . . irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.12
The American Academy of Neurology similarly defines brain death as “the irreversible loss of the clinical function of the brain.”13
Brain death is sometimes misunderstood as meaning that no living brain cells remain in the brain. That isn’t required for a determination of brain death and, in any event, it also isn’t true when a person is declared dead because his heart has stopped. In fact, studies have shown that brain cells may remain alive for an extended time after heart death, with one study reporting that viable brain cells were obtained during an autopsy conducted eight hours after death.14
Part of the continuing intensity of the brain-death controversy may be due to nomenclature. According to a white paper put out by the President’s Council on Bioethics in 2008, the term “brain-dead” causes much public confusion. First, this term (like heart death) wrongly implies that there is more than one kind of death:
Whatever difficulties there might be in knowing whether death has occurred, it must be kept in mind that there is only one real phenomenon of death. Death is the transition from a living mortal organism to being something that though dead, retains a physical continuity with the once-living organism. (My emphasis.)
Second, describing a deceased person as brain-dead “implies that death is a state of cells and tissues constituting the brain.” Rather, “what is directly at issue is the living or dead status of the human individual, not the individual’s brain.”
Finally, the Council noted that death “is a clinical state or condition made evident by certain ascertainable signs.”15 In other words, there are measurable indicia of life—or its absence—that can be determined in the clinical setting.
The Council recommended replacing the term “brain death” with the more comprehensible “total irreversible brain failure,” or “total brain failure,” for ease of wording.16 This is very helpful and elucidating: Just as a patient has unquestionably died when her heart and lung functions have irreversibly collapsed, so too has the human being ceased to be once her brain has totally failed.
Another useful way of describing brain death is “death declared by neurological criteria.” In laypeople’s language, all of this means the entire brain, and each of its constituent parts, is not functioning as a brain and never will again. There is very little or no neural electrical activity; there is no respiratory drive; there is a complete absence of even the most rudimentary brain stem reflexes. For example, the pupils remain at the midpoint, just like the pupils of heart-dead corpses. Nor do they react to bright light. The usual gagging response is absent, even when a tube is inserted through the mouth into the pharynx. According to a finding of the American Academy of Neurology published in 2010, there have been “no published reports of recovery of neurologic function [in adults] after a diagnosis of brain death.”17 None.
The popular media also sow confusion about whether brain-dead is dead, sometimes incorrectly using the term for a patient diagnosed to be in a persistent vegetative state (PVS)—such as the late Terri Schiavo. This is a misnomer. Unlike those who have experienced total brain failure, patients in PVS are unquestionably alive—both legally and physically. For example, the persistently unconscious have measurable brain activity, some reflex function, and, like Schiavo, can often breathe without medical assistance. In contrast, people who have experienced total brain failure exhibit none of these properties of living persons.
Is Total Brain Failure Really “Dead?”
Brain death remains heatedly controversial among a minority of observers. Some pro-life activists worry that the concept is actually a subterfuge to permit organ harvesting from severely disabled but still-living people, or see it as an excuse to stop life support for expensive and/or morally devalued patients.
Perhaps the most well-known and passionate of these advocates is the neonatologist and pediatrician Dr. Paul A. Byrne, who argues that brain-dead people remain alive precisely because ventilator-facilitated respiration works and these people’s hearts continue to beat:
Without respiration and circulation, health of the person deteriorates, ultimately ending in death. This deterioration is manifest in cessation of vital activities and structural changes of disintegration, dissolution and/or destruction of cells and tissues of organs and systems. These changes can be detected at the microscopic level, but eventually in death, they become evident as decay, decomposition and putrefaction. After true death chest compressions or a ventilator can only move air; there cannot be respiration, because respiration is a function of a living human body.
Byrne also brings religion into his advocacy:
Contrariwise, if such efforts at ventilation and respiration are successful, that can be only because soul and body unity is still present, i.e., because the person is still living, not dead. Respiration, circulation and heartbeat can be present only in a living person, not a cadaver.18
Souls can’t be measured. Moreover, Byrne’s thesis is belied by the scientific fact that the heart does not require a living body (or hence, the presence of a soul) to continue beating. In fact, kept in a proper solution, the heart can continue to beat outside the body for hours because it has independent nerve centers that stimulate its contractions.
Moreover, ventilation requires no intrinsic activity of the lungs. The lungs themselves are inflated with air only if the diaphragm and some chest wall muscles contract. Deflation occurs when those muscles relax, and the natural rubber-like elasticity of the lungs squeezes them down to their former volume. Contraction of the muscles essential for breathing occurs only if a signal descends from the brain to direct that contraction. Unlike the heart, the lungs have no intrinsic nerves to maintain their activity. When the brain totally ceases to function, breathing stops.
Byrne’s use of the words “ventilation” and “respiration” (see above) could leave the misleading impression that they are synonyms. But these are distinct biological activities. Ventilation simply is air moving in and out of the lungs, just as it does in a bellows. In contrast, respiration is the “sum total of the physical and chemical processes in an organism by which oxygen is conveyed to tissues.”19
Thus, when the brain totally ceases to function, spontaneous ventilation does not occur. Artificial ventilation can put oxygen into the blood, and the intrinsic activity of the heart can make the blood circulate, and can maintain respiration throughout the body. Importantly, however, in the case of brain death, there is no blood flow to the brain, and therefore there is no respiration in the brain. In fact, that is why the brain is dead and will never recover.
The fact that a heart can beat and the lungs function passively after death has been demonstrated vividly by the recent invention of machines that allow both organs to work from the time of removal from a donor’s body until they are later transplanted into living patients. (Previously, the hearts and lungs, like other transplantable organs, would be kept cold but inert during this time period.) As one story reported:
When the lungs are inside the Organ Care System, “they are immediately revived to a warm, breathing state and perfused with oxygen and a special solution supplemented with packed red blood cells,” according to the UCLA press release. UCLA is also known for developing the “heart in a box,” a similar technique that keeps a transplant heart beating and warm before transplantation.
In November 2012, a team at UCLA successfully completed the first “breathing lung” transplant on a 57-year-old patient who had pulmonary fibrosis. Pulmonary fibrosis is a disease causing the air sacs of the lungs to be replaced by scar tissue. The patient received two new lungs and recuperated properly afterward.20
Clearly, then, the heart can beat and the lungs function passively when not inside a still-living person. It is thus hardly surprising that other organs and body functions that don’t require direct brain involvement continue to function in the brain-dead. In almost all cases, however, despite technological interventions, even these self-directed capacities will eventually be lost in someone with total brain failure as the medical complications accumulate with the passage of time.
Ah, but not in every case, notes brain-death skeptic Dr. Alan Shewmon. The neurologist, once a believer in the validity of brain death, now asserts that the rare extended continuation of bodily function after declaration of brain death calls into question the entire concept.
Years ago, Shewmon identified some 175 cases of brain-dead bodies functioning for one week or more. One-half of these cases experienced body survival for one month, one-third for two months, and seven percent for one year. One person declared dead by neurological criteria had been kept functioning for more than 16 years at the time Shewmon wrote his paper.21
I am not convinced that these rare anomalies undermine the concept that total brain failure equals death. Maintaining long-term body viability involves much more than artificial respiration. For example, the bodies of those with total brain failure don’t manufacture crucial hormones, which therefore must be administered. Blood pressure also becomes a significant issue and needs to be addressed by medical means.
With advances in medical sophistication, it is possible that more of the brain-dead could be maintained long term. But that isn’t the same thing as being “alive.”
Both Drs. Byrne and Shewmon are motivated by a sincere belief in the Hippocratic tradition, and a devout adherence to the sanctity and equality of all human life. But it seems to me that, accurately determined, someone who has experienced total brain failure is just as “dead” as someone who has experienced irreversible cessation of cardiopulmonary function. It is an objectively measurable, medically determinable, biological event that is not any less real because of the tiny percentage of those whose organs and body systems have been kept functioning for extended periods. This would be true even if a majority of the bodies of brain-dead people could be maintained long term through modern technology.
The extent and thoroughness of testing required for a proper finding of total brain failure gives weight to this perspective. First, the finding of total brain failure requires an accurate patient history of extended absence of oxygen delivery to the whole brain. It also requires extensive testing while the patient is not on sedating drugs. There can be no measurable electrical brain function. And here are just some of the criteria the American Academy of Neurology has established for determining death by neurological criteria (my emphases):
Patients must lack all evidence of responsiveness. Eye opening or eye movement to noxious stimuli is absent. Noxious stimuli should not produce a motor response other than spinally mediated reflexes. The clinical differentiation of spinal responses from retained motor responses associated with
B. Absence of brainstem reflexes.
• Absence of pupillary response to a bright light is documented in both eyes.
• Absence of ocular movements using oculocephalic testing and oculovestibular reflex testing. Movement of the eyes should be absent during 1 minute of observation. Both sides are tested, with an interval of several minutes.
• Absence of corneal reflex. Absent corneal reflex is demonstrated by touching the cornea with a piece of tissue paper, a cotton swab, or squirts of water. No eyelid movement should be seen.
• Absence of facial muscle movement to anoxious stimulus.
• Absence of the pharyngeal and tracheal reflexes. The pharyngeal or gag reflex is tested after stimulation of the posterior pharynx with a tongue blade or suction device. The tracheal reflex is most reliably tested by examining the cough response to tracheal suctioning. The catheter should be inserted into the trachea and advanced to the level of the carina followed by 1 or 2 suctioning passes.
C. Apnea Test
• Absence of a Respiratory Drive.
• Absence of a breathing drive is tested with a CO2 challenge. Documentation of an increase in PaCO2 above normal levels is typical practice. It requires preparation before the test.22
The tests, which should be administered at least twice, several hours apart, should come to identical conclusions. And in addition to physical examination, sophisticated brain scanning such as an EEG, MRI, and cerebral angiography is done.
If any of the above (or other) tests demonstrate even the most rudimentary responsiveness, the patient is alive and there will (should) not be a declaration of death, because total brain failure has not occurred. As most of the members of the President’s Council noted in accepting brain-dead as dead:
[T]he patient with total brain failure is no longer able to carry out the fundamental work of a living organism. Such a patient has lost—and lost irreversibly—a fundamental openness to the surrounding environment on his or her own behalf . . .
A living organism engages in self-sustaining need-driven activities critical to and constitutive of its commerce with the surrounding world. These activities are authentic signs of active and ongoing life. When these signs are absent and these activities have ceased, then a judgment that the organism as a whole has died can be made with confidence.23
A more vivid—if crass—way of describing why total brain failure equates with death is this: “Imagine a person with his head cut off, who is somehow kept from losing blood and whose circulatory system is intact,” one doctor told me when I researched this subject for my book, Culture of Death. “That is the functional equivalent of a true brain death. We can keep the body going for a time through medical technology, but would anyone really consider a headless, but functioning body, a living person?”24 For me, that remains the most compelling argument.
What If You Don’t Believe Total Brain Failure Is Dead?
Some readers of this article may remain unconvinced that total brain failure means that a person is really dead. The question thus becomes: Can anything be done to ensure that they or their loved ones are not declared dead by neurological criteria and/or to ensure medical maintenance in the face of total brain failure?
The simple answer in most states is no. New York and New Jersey allow a religious exception to brain death. But most state laws and/or hospital practices are like those followed in California. If the family objects to the finding, they may have to litigate. In such cases, a judge will often obtain an independent medical opinion, as happened in the McMath case. But this will not be a contest about whether total brain failure means that someone is dead—that is now settled law. Rather, the litigation would primarily contest whether the condition was properly determined in the particular circumstance.
It is true that some, like Jahi’s family, opt to maintain (the bodies of) their loved ones for as long as possible. But with rare exceptions noted above, they don’t necessarily have the legal right to do so, and in any event, the costs will not be paid for by health insurance or government benefits, because the brain-dead person is not legally a living patient.
But what if one refuses to be an organ donor? Will that provide protection against a declaration of brain death and the subsequent withdrawal of all medical interventions?
No. The question of organ donation and the declaration of death are distinct. The ultimate issue isn’t whether a patient will be an organ donor but whether that patient is alive. Once death has been declared, by either brain or heart criteria—again, with rare exceptions—the hospital has no legal obligation to continue medical intervention beyond a brief adjustment period. Moreover, as with the Jahi McMath case, a death certificate can be issued.
Brain-death controversies get a lot of attention, but the concept is all but universally accepted in medicine, law, and society. It is also accepted by most religious traditions. For example, the Catholic Church—hardly an advocate of utilitarian medicine—recognizes total brain failure as a valid basis for declaring a person to be legally dead.25
Whatever one might believe individually, here’s the hard bottom line: Once a patient is brain-dead, he or she is no longer among the living but has, as Shakespeare artfully put it, passed “through nature into eternity.”
1. Many commentators use the term “Jahi’s body” when describing her current circumstance. While I believe that, properly diagnosed, “brain death” is death—as described above—I don’t employ that terminology because it would be so hurtful to Jahi’s family and there is always the possibility, however unlikely, that the doctors’ determinations were erroneously made.
2. Carolyn Jones and Bob Egelko, “Judge Rules Against Brain-Dead Girl’s Family,” San Francisco Chronicle, December 24, 2013, http://www.sfgate.com/news/article/Jahi-McMath-is-brain-dead-doctor-testifies-5091298.php
3. California Health and Safety Code section 7180. “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.” See also, section 1254.4.
4. Henry K. Lee, “Hospital Agrees to Let Jahi McMath Family Take Girl,” San Francisco Chronicle, January 3, 2014,http://www.sfgate.com/bayarea/article/Hospital-agrees-to-let-Jahi-McMath-family-take-5111584.php?cmpid
5. Texas Health and Safety Code Section 166.049.
6. Munoz v. John Peter Smith Hospital, District Court of Tarrant County, Texas, Cause number 096-270080-14, Judgment, January 24, 2014. http://www.scribd.com/doc/202053415/Judges-Order-on-Munoz-Matter
7. Kristina Jovanovski, “Baby Born to a Brain Dead Mother,” Daily Mail, November 13, 2013.http://www.dailymail.co.uk/health/article-2506281/Baby-born-brain-dead-mother-foetus-survives-15-27-weeks.html
8. Some of the below material first appeared in Wesley J. Smith, Culture of Death: The Assault on Medical Ethics in America(New York, Encounter Books), 2001.
9. James L. Bernat, “A Defense of the Whole-Brain Concept of Death,” Hastings Center Report, March-April 1998, p. 15.
10. Id. p. 20.
11. See, for example, Mohamed R. Rady et al., “Organ Procurement After Cardiocirculatory Death: A Critical Analysis,”Journal of Intensive Care Medicine, 2008 23: 303 http://jic.sagepub.com/content/23/5/303.full.pdf
12. Uniform Determination of Death Act, 1980, http://pntb.org/wordpress/wp-content/uploads/Uniform-Determination-of-Death-1980_5c.pdf
13. The American Academy of Neurology, “Practice Parameters For Determining Brain Death in Adults,” November 1994.
14. Ronald W. H. Verwer et al., “Cells in Human Postmortem Brain Tissue Slices Remain Alive for Several Weeks in Culture,The Journal of the Federation of American Federation of Experimental Societies, September 12, 2001,http://www.fasebj.org/content/16/1/54.long
15. President’s Council on Bioethics, Controversies in the Determination of Death, December 2008, pp. 17-18.https://bioethicsarchive.georgetown.edu/pcbe/reports/death/
16. Id., p. 19.
17. Eelco F.M. Wijdicks et al., “Evidence-based Guideline Update: Determining Brain Death in Adults: Report of the Quality Standards Subcommittee of the American Academy of Neurology,” Neurology, June 8, 2010, https://www.aan.com/PressRoom/Home/GetDigitalAsset/8470
18. Paul A. Byrne, “A Living Human Person Until Death,” Renew America, February 11, 2015, http://www.renewamerica.com/columns/byrne/130211
19. Dictionary.com, http://dictionary.reference.com/browse/respiration
20. Lecia Bushak, “‘Organ Care System,’ Medical Device, Allows Lungs to ‘Breathe’ Outside Body Before Transplant,”Medical Daily, February 11, 2014, http://www.medicaldaily.com/organ-care-system-medical-device-allows-lungs-breathe-outside-body-transplant-269099
21. D. Alan Shewmon, “Chronic ‘Brain Death’: Meta-Analysis and Conceptual Consequences,” Neurology, Vol. 51, December 1998, p. 1542. Electronic correspondence to author, October 5, 1999.
22. Eelco F.M. Wijdicks et al., “Evidence-based Guideline Update,” supra, pp. 1911-1918.
23. President’s Council, “Controversies,” supra, pp. 90-91.
24. Wesley J. Smith, Culture of Death, supra, p. 172.
25. National Catholic Bioethics Center, “FAQ on ‘Brain Death,’” http://www.ncbcenter.org/page.aspx?pid=1285