“Death has been dissected, cut to bits by a series of little steps, which finally makes it impossible to know which step was the real death, the one in which consciousness was lost, or the one in which breathing stopped.” – Philippe Aries, 1975
On June 22 of 2018, a 17-year-old girl named Jahi McMath went into acute liver failure and passed away. But according to the state of California, McMath had already been legally dead for 5 years (1). How is this possible?
The answer lies in the fact that McMath was declared brain dead in 2013 but remained on life support for the next five years. Her case has deeply shaken medical and ethical frameworks of what is considered death for physicians as well as patients.
It seems like it should be obvious whether someone is alive or dead. And yet, the determination has gotten progressively more complicated and controversial as medical technologies have improved. As St. Louis University Professor of Philosophy Jeffrey Bishop writes, “On the surface, ‘brain death’ appears to be a very stable concept, but, in practice, we see it frays at the edges” (1). What does a designation of brain death mean, and how has that definition changed over the years? Does a physician’s authority extend to removing life support from a brain dead individual? And how far is too far to keep someone alive?
Definitions of Brain Death, Then and Now
What is brain death? Current guidelines define it as “the irreversible loss of all functions of the brain, including the brainstem,” generally typified by coma (absence of response to sensory stimuli), absence of brainstem reflexes, and apnea (inability to sustain breathing) (2). This definition emerges almost wholly from a 1968 ad hoc committee convened at Harvard Medical School to discuss and examine definitions of brain death (3). Since then, every state in the US has adopted legislation, through the 1981 Uniform Determination of Death Act (UDDA), that defines death by meeting at least one of two criteria: cessation of heartbeat and respiration, or “irreversible cessation of all functions of the entire brain, including the brain stem” (4).
The rationale behind this is the idea that the brain is the control center of the body – without it, the body cannot survive for long (3). The advent of technological advance, however, throws this in question; while perhaps in 1981 cessation of brain function implied and necessarily was followed by cardiac arrest, with the advent of improved ventilators, tube feeding, and other life support technologies, it becomes increasingly unclear what our understandings of “death” should be: the body can survive long after the brain ceases to function. Thus, the divide between biological death and brain death grows.
As Harvard Bioethicist Robert Truog describes the particular challenge of brain death, “Although legal definitions are typically defined by bright lines, biology tends to be continuous” (5). Essentially, brain death is a designation existing for legal reasons that does not necessarily fit biological criteria and understandings of bodily functions. And yet, this definition maintains medical and biological importance, though the line may be inherently arbitrary.
Part of the difficulty, especially for the patients’ loved ones, is that brain dead individuals often do not appear “dead” to the observer – their heart may still beat, and they may still breathe with assistance from machines. It is also difficult to distinguish between the irreversible unconsciousness that characterizes brain death and potentially reversible states of coma (6). The main difference is that brain dead individuals are incapable of breathing on their own and would quickly arrest and die if removed from supportive care. Physicians are still undecided, however, on the minimum acceptable observation period to determine cessation of neurologic function – that is, it still comes down to a judgment call (7).
Beyond the cognitive dissonance that inevitably makes accepting brain death difficult for patients’ loved ones, it is also challenging to reconcile brain death with other, generally religious, definitions of death. For example, many Orthodox Jews and Native Americans maintain that death only occurs upon cessation of breathing, not only upon cessation of brain function (8). Thus, current definitions of death, and whether brain death constitutes death, are multiple and controversial.
The Case of Jahi McMath
Discussions of death and dying can seem abstract and theoretical, but they come to real-life importance frighteningly quickly as in the case of Jahi McMath. After a routine tonsillectomy operation to treat sleep apnea in 2013, then-thirteen-year-old Jahi McMath began to bleed and went into cardiac arrest, falling into a coma from which she would never awaken (9). She was declared by physicians and then a judge to be “brain dead.” By California law, which follows the UDDA, persons declared brain dead are deemed legally dead and must be disconnected from ventilators after a “reasonably brief period of accommodation” (10).
McMath’s family fought bitterly for her to be sustained on a ventilator and other supportive technologies – a judge issued a temporary restraining order to prevent the hospital from disconnecting McMath’s ventilator (which they were compelled to do in adherence to UDDA and to maintain their organ donation program), and she was evaluated by an independent physician who also declared her brain dead (11). In January, the hospital agreed to release McMath to the county coroner, who could then release the (legally dead) body to her family, with the understanding that her family would take full responsibility of her care (11).
Two states, New York and New Jersey, allow exceptions to the UDDA for religious reasons (6). For this reason, McMath’s family transferred her to a hospital in New Jersey, where she remained for several months to stabilize her (as a result of the court case and transfer, she had not been fed in three weeks and several organs were failing) (10). For the next four years, she sustained a heartbeat and other vital functions, receiving round-the-clock nursing care in an apartment (10).
Over the course of this period, she grew and went through puberty, even beginning menstruation, opening up still more questions about the ability of the body to live on after brain death (10). Indeed, in the few recorded cases of brain dead individuals sustained on life support, others have also demonstrated this: for example, one individual who had been declared brain dead survived for nearly 20 years, growing and functioning even though his brain demonstrated no tenable structure and showed calcification (12).
For five years, the McMath family has continued to battle the Children’s Hospital of Oakland, where she was treated and plan to continue to do so after her death (9). The case remains the subject of heated debate within and outside the medical community, centered around questions of boundaries and rights around death.
A key difficulty in the McMath case is autonomy and choice: McMath could not choose whether she wanted to continue on living in this way because of course she could not communicate. In this way, the McMath case recalls many other controversial right-to-life cases, such as that of Terri Schiavo in 2005, whose family maintained her right to life support in an irreversible comatose state (slightly different from McMath’s in that she retained some brainstem function) (13). The perennial question that plagues the medical establishment is who holds the right to make decisions about the patient’s care?
These decisions and debates are made more difficult by a constant imbalance of information and expertise between physicians and families. Indeed, one of the difficulties of McMath’s case is the refusal of her family to accept her brain dead status as permanent. McMath’s mother, Nailah Winkfield, has said that after her transfer to New Jersey “I didn’t have a clue. I had really thought that I would get her a feeding tube and a tracheotomy, and she would just get up, and we would be good” (10). This is one reason why many physicians and bioethicists vehemently oppose contestations of the term brain death – they worry that it may give families false hope of their relatives’ potential for recovery.
The case of Jahi McMath demonstrates the obvious difficulty of delineating death. But perhaps one of the most important lessons it demonstrates is the importance of clear, open, and honest communication between patients and families.
Consequences of Changing Definitions
What are the consequences of allowing families like McMath’s to continue life support for a brain-dead individual? While the debate can easily turn towards arguments and discussions of autonomy and who has the right to end or maintain a life, there are many practical concerns that come with a declaration of death – for example, execution of wills and burial proceedings.
In the landmark 1968 document defining brain death from the Harvard Medical School Committee, the reasons for making this delineation were clearly laid out: first, because “improvements in resuscitative and supportive measures have led to…[the existence of] an individual whose heart continues to beat but whose brain is irreversibly damaged” which is burdensome to families and healthcare systems; and second, because “Obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation” (14).
In fact, it was the first successful heart transplant in 1967 that prompted the formation of the committee on brain death at Harvard in the first place (3). This is no coincidence; with increasing success rates in organ transplantation surgeries, the medical establishment found itself in a paradoxical predicament – needing recently alive organs, but not being able to ethically remove organs from a live person. As one New Yorker editorial put it, “the need for both a living body and a dead donor” (15). Brain dead individuals provide just that.
This may seem a bit morbid, but as Harvard ethicist Robert Truog notes, “Since 1968 literally hundreds of thousands of lives have been saved or improved because we’ve been able to view this diagnosis as a legitimate point for saying that these patients may be considered legally dead” (3). Indeed, a change or limit in the definition of brain death would certainly hinder transplantation to a significant degree – even McMath’s lawyer expressed concern that “we may screw up organ donation” (10).
Beyond organ donation, there is the question of hospital resources. As one bioethicist puts it, “every extra hour of nursing time that goes into one of these dead patients is an hour of nursing time that didn’t go to somebody else” (10). Looking at it financially, McMath’s ICU care in New Jersey cost, on average, $150,000 per week, all paid for by Medicaid (10). Given the already limited resources available in intensive care units, many question the ethics of continuing to support and sustain patients with no chance of recovery at the expense of helping others, with potentially better chances at recovery.
And yet, is this premise of delivering the most good to the most people enough to justify a definition of brain death? The philosophical debate between utilitarian principles and notions of individual rights to long-term support rages on. But perhaps the most important consequence of the definition of brain death is the opportunity to initiate the beginnings of closure for the family – something that is often difficult if the definition remains blurry.
Is there hope for the brain dead?
One of the most controversial aspects of the McMath case was the claim by a neurologist who examined her that she may have shown signs of consciousness and some restored brain activity before she died. Calixto Machado, president of the Cuban Society of Clinical Neurophysiology, observed in McMath’s scans that though her brain stem was almost entirely destroyed, significant portions of her cerebrum were intact (10). This is unexpected, because in the few documented cases like McMath’s, nearly all brain matter is destroyed because of poor circulation on a ventilator. Beyond this, video recordings taken by McMath’s mother seem to show the girl responding to commands and perhaps even recognizing her mother’s voice by a change in heart rate (10).
But a meta-analysis of neurology scholarship by the American Academy of Neurology (AAN) concluded that there are no cases of recovery of brain function after being declared brain dead (7). In this analysis, they did find several reports of apparently-stimulated motor movements in brain dead patients, much like what McMath’s family observed, but concluded that these “falsely suggest retained brain function” and are not in fact indicative of consciousness (7).
There remains interest in treatments to reverse brain death. A company called Bioquark is pursuing a clinical trial to inject stem cells into the spinal cords of brain dead individuals among other treatments (16). Similar treatments have been somewhat successful in patients with other sorts of brain damage (stroke patients, children with brain injuries), but these trials have been vehemently opposed by several neurologists as “border[ing] on quackery” and “creat[ing] room for the exploitation of grieving family and friends and falsely suggest[ing] science where none exists” (17). Indeed, the fact remains that at this moment in time, brain dead patients have no hope for recovery.
Altogether, though, it seems that brain death is still an open question – and one that will continue to get more complicated as medical innovations improve. Though the definitions of brain death continue to be delineated based on AAN guidelines heavily similar to the original 1968 document, researchers are still working to determine what scans and tests can more completely demonstrate what is happening in a brain dead patient. But as our ability to bring individuals back from dire situations improves, the need for clarity on what it means to die – and beyond, what constitutes being alive – becomes ever more pressing.
Caroline Wechsler is a senior in Currier House studying History and Science
 Bishop, Jeffrey. Why “Brain Death” Is Contested Ground. Accessed September 30, 2018. https://bulletin.hds.harvard.edu/articles/winterspring2015/why-brain-death-contested-ground.
 Goila, Ajay Kumar, and Mridula Pawar. “The Diagnosis of Brain Death.” Indian Journal of Critical Care Medicine : Peer-Reviewed, Official Publication of Indian Society of Critical Care Medicine 13, no. 1 (2009): 7–11. https://doi.org/10.4103/0972-5229.53108.
 Powell, Alvin. “Harvard Ethicist Robert Truog on Ambiguities of Brain Death – Harvard Gazette.” Accessed September 30, 2018.
 Sade, Robert M. “BRAIN DEATH, CARDIAC DEATH, AND THE DEAD DONOR RULE.” Journal of the South Carolina Medical Association (1975) 107, no. 4 (August 2011): 146–49.
 Truog, Robert D. “Defining Death—Making Sense of the Case of Jahi McMath.” JAMA 319, no. 18 (May 8, 2018): 1859–60. https://doi.org/10.1001/jama.2018.3441.
 Powell, Tia. “Brain Death: What Health Professionals Should Know.” American Journal of Critical Care 23, no. 3 (May 1, 2014): 263–66. https://doi.org/10.4037/ajcc2014721.
 Machado, Calixto, and Mario Estevez Jesús Pérez-Nellar. “Evidence-Based Guideline Update: Determining Brain Death in Adults.” Neurology, September 30, 2018.
 Singh, Maanvi. “Why Hospitals And Families Still Struggle To Define Death.” NPR.org. Accessed October 1, 2018. https://www.npr.org/sections/health-shots/2014/01/10/261391130/why-hospitals-and-families-still-struggle-to-define-death.
 Goldschmidt, Debra. “Jahi McMath, California Teen at Center of Brain-Death Controversy, Has Died.” CNN. Accessed September 26, 2018. https://www.cnn.com/2018/06/29/health/jahi-mcmath-brain-dead-teen-death/index.html.
 Aviv, Rachel. “What Does It Mean to Die?” The New Yorker, January 29, 2018. https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die.
 Burkle, Christopher M., Richard R. Sharp, and Eelco F. Wijdicks. “Why Brain Death Is Considered Death and Why There Should Be No Confusion.” Neurology 83, no. 16 (October 14, 2014): 1464–69. https://doi.org/10.1212/WNL.0000000000000883.
 Shewmon, D. Alan. “Recovery from ‘Brain Death’: A Neurologist’s Apologia.” The Linacre Quarterly 64, no. 1 (February 1997): 30–96. https://doi.org/10.1080/20508549.1999.11878373.
 Grossman, Cathy Lynn. “Family, Ethics, Medicine and Law Collide in Jahi McMath’s Life _ or Death.” Washington Post. Accessed September 26, 2018. https://www.washingtonpost.com/national/religion/family-ethics-medicine-and-law-collide-in-jahi-mcmaths-life-_-or-death/2014/01/03/3b8ced32-74be-11e3-bc6b-712d770c3715_story.html.
 “A Definition of Irreversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.” JAMA 205, no. 6 (August 5, 1968): 337–40. https://doi.org/10.1001/jama.1968.03140320031009.
 Greenberg, Gary. “As Good as Dead.” The New Yorker, August 6, 2001. https://www.newyorker.com/magazine/2001/08/13/as-good-as-dead.
 Sheridan, Kate. “Resurrected: A Controversial Trial to Bring the Dead Back to Life.” Scientific American. Accessed September 26, 2018. https://www.scientificamerican.com/article/resurrected-a-controversial-trial-to-bring-the-dead-back-to-life/.
 Lewis, Ariane, and Arthur Caplan. “Response to a Trial on Reversal of Death by Neurologic Criteria.” Critical Care 20 (November 22, 2016). https://doi.org/10.1186/s13054-016-1561-5.
Image credit: Wikimedia Commons