In 2013, Jahi McMath, an Oakland teenager, underwent surgery to remove her tonsils and help correct her sleep apnea. Shortly thereafter, her heart stopped. Jahi was placed on a ventilator but was soon declared brain dead. Her mother insisted that the doctors were wrong — Jahi was still alive. Hospital staff encouraged the McMath family to think about withdrawing life support, but the family declined. In late December, Jahi McMath’s case started to gain publicity in the community. Medical scientists and Bioethicists around the country chimed in, insisting that “there is absolutely no medical possibility that J McMath has recovered, or will someday recover, from death.” A judge ruled that Jahi was to be removed from life support after a subsequent series of scans showed little blood flow to the brain. However, Jahi’s family was filled with a sense of injustice from the medical system and resolved to fight until they could safely bring their child home.
After a series of highly publicized court hearings, on January 3rd, the McMath family reached a settlement with the Children’s Hospital of Oakland, in which the hospital agreed to release Jahi back into the care of her family. After the settlement, McMath and her mother relocated to New Jersey — one of two states in the country that permits religious exemptions to a brain death diagnosis. For four years, Jahi remained on life support but never regained her cognitive function. However, on the one-year anniversary of her surgical complication, Jahi received scans that showed subtle activity in some parts of the front of her brain. Some neurologists contended that because of this, and because of Jahi’s ability to move her limbs on command, she was not brain dead. Doctors continued to puzzle over the incoherence between the legally accepted construct of brain death and more biologically complex definitions of death.
By 2018, Jahi’s liver was failing. Her family then opted to withdraw life support, and she was laid to rest in her hometown of Oakland. During the funeral service, Jahi’s mother declared, “Stop letting [doctors] pull the plug on your people. They are not God.” So how are we to make sense of the Jahi McMath case? Doctors in California declared a teenager dead, but her family insisted that she was alive, so much so that they moved her across the country to keep her on a ventilator. I will consider three different themes that might help us better understand the case.
Death, Brain Death, and Technology
Jahi McMath’s story calls into question what it means to die and the methods by which we quantify death. While the cessation of a pulse signaled death 100 years ago, now machines can stimulate the heart using electrical current, push air into lungs too weak to breathe on their own, and sustain bodies beyond what was once imaginable. However, the technological boom spawned many concerns; how do hospitals manage their life-sustaining resources? At what stage are organs allowed to be harvested for transplantation? All the while, there have been well-documented cases of patients miraculously “waking up” after more than a decade in persistent vegetative states. How, then, do physicians discern who remains on life support?
In 1968 a new criterion for death was born. In a famous Journal of the American Medical Association publication, the Ad Hoc Committee of Harvard Medical School proposed that “an organ, brain or other, that no longer functions, and has no possibility of functioning again is for all practical purposes dead.” Of primary interest to the committee was accurately measuring brain activity as a correlate for higher-order cognitive function. With the nascent development of brain imaging technology, scientists were able to able to make inferences between brain activity and behavior for the first time. In particular, the electroencephalogram (EEG) was an early method to measure electrical impulses in the brain over time. Akin to the flatline on a cardiac monitor, researchers reasoned that an EEG flatline indicated the termination of all cognitive function — brain death. This legal definition of death has since been accepted by the medical community in order to support public policy around end-of-life care.
Nearly 50 years after the conception of brain death, the McMath case challenges both the construct’s ethical and biological validity. After two hours of cardiac resuscitation, Jahi received the same onslaught of tests prescribed by the ad hoc committee in 1968 to assess neurological function. Like patients in a coma or persistent vegetative state, McMath was unable to respond to commands, breath without ventilation, or elicit reflex reactions. According to physicians at Oakland Children’s, it was Jahi’s blank EEG that ultimately indicated brain death. However, to the McMath family, their daughter was anything but dead. In the ensuing days, months, and years, Jahi exhibited behavior that continues to puzzle medical professionals and bioethicists alike.
After being pronounced brain dead, McMath continued to move her extremities at random. Physicians tried to assure the McMath family that this was a well-known spinal reflex in brain-dead patients called a Lazarus sign. However, puzzling still is the video footage of Jahi responding to her mother’s commands to move her fingers in ways that appear deliberate rather than random. Additional physiological tests by Dr. Calixto Machado noted a significant change in McMath’s heart rate in response to her mother’s voice. This contradicts the case medical researchers so vehemently proposed at the 2013 hearings: McMath was a corpse incapable of responding to verbal commands with no plausible cerebral mechanism to hear.
One of the most remarkable aspects of the McMath case was the outcry from the Bioethics community regarding keeping Jahi on life support. Other physician scientists cautioned that Jahi’s case might embolden other families to pursue similar treatment and ultimately forgo organ donation. In an op-ed for Newsweek, Dr. Arthur Caplan, founding head of the Division of Medical Ethics at NYU, asserted that “to keep Jahi’s body on machines is ethically wrong because definitive brain death is death and maintaining a corpse by artificial means is only slowing the inevitable decay and collapse of bodily remains.” However, over the course of four years on life support, Jahi’s body continued developing rather than decomposing. The teen entered puberty and began to menstruate— a physiological function thought to be mediated by the hypothalamus— suggesting perhaps some brain activity after all.
Just months before Jahi McMath was finally laid to rest, the Center of Bioethics at Harvard Medical School convened for its annual conference. The topic of discussion at the 2018 gathering was the legacy of the 1968 Brain Death report in reconciling modern resuscitation efforts and the continued need for organ transplantation. Bioethicist Robert Truog stressed the need to acknowledge that while brain death is first and foremost a legal status and thus does not cohere with a biological definition of death. Truog states, “once brain death is recognized as a social construction not grounded in biological reality, we create the possibility of changing the social construction in ways that may better serve both organ donors and recipients alike.” The difficulty lies in cases like McMath’s, where legal decisions were made on the basis of a supposed lack of brain activity. As neuroscience affords us greater insight into the brain, researchers should continue refining the criteria for Brain Death. Jahi’s case illustrates that gradations of brain activity may be more complex than early methodology might indicate.
Child Death
Technology has changed Americans’ relationship with death. Medical treatments can extend life and cure illness in ways that are quite novel. Most adults now die from one of six common causes: cardiovascular disease, cancer, stroke, chronic lung disease, diabetes, or neurodegenerative disease. Each of these ailments is generally well-understood by the biomedical establishment and has a well-defined course of treatment. To some extent, the same is true for children. Over the course of the last hundred and fifty years, child life expectancy has increased dramatically due to improvements in sanitation and medical technology. Most children born in the United States today will live to see adulthood — a fact that was not the case for much of American history. One key difference between children and adults with regard to the impact of improved medical technology is the cause of death. Biomedicine has very successfully lowered the risk of death for many common childhood dangers. Children today are much less likely to die during childbirth or from childhood infection. Instead, children today tend to die from unpredictable accidents or rare illnesses with poorly-defined courses of treatment. The expectation in the United States today is that children don’t die, and in the event that a child is seriously ill, adults (both parents and doctors alike) tend to believe that the application of medical technology will be able to save a child and allow them to live a long life. The unpredictability of child death, combined with its relative rarity, makes the experience of a dying child especially painful for parents.
Jahi McMath entered the hospital for a safe, routine procedure. Many children have their tonsils removed and experience no adverse effects from surgery. Within the span of a week, Jahi went from relatively healthy to declared brain dead and only breathing with the assistance of a ventilator. The short span of time in which Jahi, a child, became irreversibly brain-damaged is likely to have contributed to her family’s shocking and frightening experience.
Race
In his novel The Beast Side: Living (and Dying) While Black in America, author Dwight Watkins writes, “African Americans continue to be the canaries in our coal mine— the citizens whose unequal opportunities and unequal rights reveal a deeper truth about the fundamental sins of our nation.” Indeed, Jahi McMath’s case highlights the fear of mistreatment and maligned intention often experienced by black people in America. This deep-rooted mistrust between African Americans and the US healthcare system traces its origins through time and continues today in the modern clinic. Slaves in the south were subject to medical experimentation — doctors like J. Marion Sims tested medical devices and gynecological surgical techniques on enslaved women. After slavery ended, African Americans were still subject to exploitation from members of the medical establishment. From 1932 to 1972, the United States Public Health Service conducted the Tuskegee Syphilis Study. Over the course of this study, African American men with syphilis were prevented from accessing treatment for syphilis, even though it was entirely treatable.
Although explicit discrimination, such as segregated waiting rooms, has largely been done away with, implicit racial bias remains. Public Health research highlights the impact of this bias in healthcare as a contributing factor to poor health in communities of color. For example, it is known that black patients are undertreated for their pain by medical professionals. Even with similar pain self-reports, black patients are significantly less likely (57%) than white patients (74%) to receive analgesics for fractures in the emergency room. In the wake of Jahi’s surgical complication, her grandmother wondered if the same tragic outcome would have occurred had Jahi been a little white girl. The same racial bias in adult pain treatment is evident in pediatrics. Out of nearly one million children diagnosed with appendicitis, black children were less likely to receive any pain medication for moderate pain and even less likely to receive opioids for severe pain than their white counterparts.
In addition, for communities where black children are more than ten times more likely to perish at the hands of gun violence, child death bears an even greater weight. Jahi McMath must then be considered in the context of the lives and deaths of Trayvon Martin, Tamir Rice, and Michael Brown — symbols of the white violence inflicted on young black bodies. During the McMath hearings, Oakland community members took to social media to express their concern, “They either wana see us dead or in jail they don’t wana see use alive.” This fear, in conjunction with concerns of being under-treated and neglected by healthcare providers, may contribute to the pursuit of more aggressive life-sustaining treatment at the end of life.
With this in mind, we might view certain features of the Jahi McMath case differently. For instance, when Jahi began hemorrhaging after surgery, her family members raised their concerns with doctors, but their concerns were dismissed. It was Jahi’s grandmother — not a member of Jahi’s healthcare team — who noticed that her oxygen saturation had dropped dangerously low. Understanding these events might illuminate why Jahi’s family regarded doctors with suspicion when they declared Jahi dead. From the family’s perspective, the doctors failed to attend to Jahi’s medical needs; and once she was placed on a ventilator, they seemed all too eager to pull the plug. As Dr. Maisha Robinson, a palliative care physician at Mayo Clinic, explained, “You have people who’ve had a difficult time getting access to care throughout their lifetimes [...] and then you have a physician who’s saying, ‘I think that we need to transition your mother, father, grandmother to comfort care or palliative care.’ People are skeptical of that.” In a similar vein, we can understand the resistance of Jahi’s family to terminate life support when their loved one still appeared very much alive.
Intersections
Each of the features I’ve explored — technology, age, and race — interact to create a complex picture of Jahi McMath’s journey through the healthcare system. Understanding the role that each of these lenses plays allows for a better understanding of how both individuals and families experience the death and the dying process. In doing so, we can attempt to better humanize the dying process and serve dying individuals and their families in therapeutic ways.
Brain death is a phenomenon that can be difficult for families to comprehend. And as Jahi McMath’s case shows, the diagnosis of brain death can seem arbitrary and be, in practice, anything but final. The status of brain death as a definitive marker of death is not uncontested, and the fuzziness of the definition of death is likely to generate further discussion in clinical settings. Age, too, plays a role in the way families experience the pain of loss. The death of a child is now a rarity, and when children do die, they tend to do so for unexpected reasons. This makes cases like Jahi’s especially difficult.
Finally, and perhaps most importantly in Jahi McMath’s case, we must understand the role that the United States’ history of racial exploitation plays in the experience of people of color who move through the healthcare system. This is particularly true for African American patients, who have been the subject of medical experimentation, neglect, and under-treatment. When Jahi’s early complications went unnoticed, and later when doctors insisted that she was dead and ought to be taken off life support, Jahi’s family felt betrayed and dismissed. Most troublingly, it leads us to wonder whether Jahi’s family would have advocated for their child differently if it felt like the hospital staff was advocating for her, too. In an interview, Jahi’s grandmother wondered aloud, “If the hospital had been more compassionate, would we have fought so much?”.