In December 2013, 13-year-old Jahi McMath went into University of California, San Francisco, Benioff Children’s Hospital of Oakland for a routine medical procedure.
She suffered from sleep apnea and her doctors hoped that removing her tonsils and some surrounding tissues would help relieve the problem.
In the recovery room after the procedure, Jahi suddenly began bleeding from her mouth and nose. Her heart stopped and she fell into a coma.
Although doctors were able to restart her heart, the damage was already done. Starved for oxygen, her brain had suffered widespread damage.
She would not breathe on her own, or open her eyes, again.
Although multiple doctors examined Jahi and proclaimed her brain dead, her family rejected their declaration. After all, Jahi’s heart was still beating.
The state of California does not allow families to dispute a physician’s determination of death, so Jahi’s family moved her to New Jersey. There, families may require — on religious grounds — that death be proclaimed only when the heart has stopped.
Jahi’s heart still beats, but as long as her death certificate remains valid in California, the family cannot move back to their home state with their daughter.
The family has filed a malpractice lawsuit. The suit itself is fairly straightforward: Jahi should not have experienced complications from what is normally a safe surgery.
If she is still alive, then there is no limit on how much the hospital could owe in damages. It could potentially be held responsible to cover the cost of care for Jahi for the rest of her life. That could run into the millions of dollars.
However, if Jahi experienced brain death, then the amount her family could receive caps out at $250,000.
An Alameda County Superior Court judge has issued a tentative ruling, saying he is inclined to uphold previous decisions that Jahi is dead. He’s expected to issue a final ruling within the next two months.
Meanwhile, while Jahi’s family fights to get her death certificate reversed, the statute of limitations is running out on the wrongful death suit they could file.
So, the question becomes: Is Jahi McMath alive or dead?
And do we, as a culture, need to redefine our decades-old understanding of what it means to be dead?
The Changing Definition of What Is ‘Brain Dead’
The declaration of “brain dead” for Oakland teenager Jahi McMath brings up the question: How is new medical technology changing the way we define death?
According to California law, a person is dead following “either irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem.”
And how is cessation of function defined?
“A determination of death must be made in accordance with accepted medical standards,” the law says.
This puts death into a special legal category where the final call is ultimately made by medical experts, not the letter of the law.
For the American Academy of Neurology (AAN), this means a physician performing a clinical examination to determine if the brainstem and cerebrum are functioning. In addition, the test must be performed a second time by a different physician to confirm that the brain is, in fact, dead, according to California law.
The Definition of Death
However, the heart can continue to beat unassisted. The heart has a self-enclosed nerve web of its own that allows it to beat without input from the brain. This can keep the rest of the body’s organs supplied with blood so they can stay alive and keep functioning as normal even after the brainstem has died.
In fact, there have been several cases of pregnant women who have suffered brain death and have been kept on a ventilator until their children successfully came to term.
Which raises the question: Why is an otherwise-living person with a dead brain considered dead?
“I think that [brain death] is a medical and legal fiction,” said Dr. John Luce, emeritus professor of medicine at UCSF, and practicing physician at the San Francisco General Hospital division of pulmonary and critical care medicine, in an interview with Healthline. “The concept was developed at a time when there was a social, ethical, medical, and legal need for it.”
Long before early humans had any idea of the importance of the brain, people judged when someone was dead using simple observation. The person would stop moving, grow stiff, cold, and bluish, and eventually, start to rot.
Then, as early medicine began to emerge, ancient physicians’ understanding of death grew more precise. When a person stopped breathing and their heart stopped beating, they were dead. And generally, one would swiftly follow the other. This definition remained for thousands of years.
Although scientists had figured out that the brain was vital by the turn of the 20th century, the knowledge wasn’t applicable. Loss of breath or heartbeat invariably resulted in death of the brain as well. But after the close of World War II, medicine experienced a revolution.
Several new innovations came on the heels of one another.
CPR was invented as was the mechanical ventilator, severing the connection between loss of breathing and death.
The intensive care unit (ICU) was established, giving life-saving opportunities to people who would have previously died of heart failure.
And perhaps most crucially, technologies and medicines improved enough to make organ transplantation feasible.
Together, these developments called for a new definition of death. They also raised a whole series of new questions.
If someone shoots another person and that person suffers brain death, but their body is kept alive in the hospital, is the shooter a murderer?
If the brain dead person had expressed the desire to donate their organs, then would ending body function by removing their organs count as murder?
A series of court cases looking into these questions led to the Uniform Determination of Death Act (UDDA). California’s legal wording for brain death, and that of most states, was adopted directly from the UDDA’s definition. New York and New Jersey are the only states that allow any kind of religious exemption.
New Technology Changes Definition
Under this definition, Jahi McMath was dead at the time she was examined.
She was unable to respond to any of the reflex tests and unable to breathe on her own. Her brainstem, at the very least, appears to be damaged or destroyed.
Christopher Dolan, attorney for Jahi and her mother, doesn’t dispute the initial test results.
“She didn’t pass any of the tests. She failed all the tests,” he said in an interview with Healthline.
However, he also argues that she was far from meeting the criteria for stability that the brain death test requires.
Does the Definition Need to Be Changed?
“She was certainly not in any condition to be tested,” Dolan said. “This was a young girl who hadn’t eaten in 26 days. No food. They stopped providing her with any type of treatment designed to maintain her existence. I am of the firm belief that they were hoping she would die so the legal case would become moot.”
Dolan added Jahi has had serious lung infection, ulcers, and kidney issues.
“She was just this side of dead,” said Dolan. “So she wasn’t in any kind of optimum condition to be evaluated.”
Even if another test were to be performed now, more than a year later, Dolan isn’t convinced that the test can measure what’s going on in Jahi’s brain.
“Now, to this date, she still may fail standard neurological testing, and the question then becomes, is the standard neurological testing adequate or is it too crude?” he asked.
According to Dolan, although Jahi’s brainstem isn’t responding, that doesn’t mean that the rest of her brain is dead.
Dolan reports that Jahi has received an electroencephalogram (EEG) that has found evidence of electrical activity in her brain. In addition, MRI scans have found that her cerebrum is physically intact and receiving blood flow.
Some states require ancillary tests like EEG or MRI to confirm lack of cerebrum function in a brain death examination, but California isn’t one of them.
Some ancillary tests have been used to claim a patient is not brain dead any longer, but ancillary tests really don’t demonstrate that, according to David Magnus, Ph.D., director of the Stanford Center for Biomedical Ethics and co-chair of the Stanford Hospital and Clinics ethics committee as well as a professor of medicine and biomedical ethics, and professor of pediatrics at Stanford University.
Magnus told Healthline these tests are used in case a physician doesn’t have the ability to do a clinical examination. They are more of a screening with the idea being, if there’s absolutely no blood flow to the brain the patient will soon be brain dead.
“It doesn’t work the other way around. Just because there’s a small amount of blood flow to the brain, that may be, say, maintaining the hypothalamus, that does not show that a patient is not brain dead,” he said.
The hypothalamus is the other brain region that’s arisen in Jahi’s case.
It’s the region of the brain that interfaces with the pituitary gland. This gland, located just below the brain, produces many of the body’s hormones, including those responsible for triggering puberty.
“Jahi went into puberty,” Dolan reports. “Dead people don’t generally mature.”
Magnus holds that this doesn’t indicate a living brain.
“It’s actually possible for there to be some hypothalamic activity in patients who are brain dead, so there can be a small amount of hormone regulation, and that is actually consistent with being clinically brain dead,” he said.
But although the California law has given the definition of death to medicine, the law itself doesn’t define death the same way.
“The definition of brain death is total, irreversible cessation of all neurological activity,” said Dolan. “So, if Jahi has neurological activity, she is not brain dead.”
Dolan also reports other evidence that Jahi has some degree of not just life but awareness.
“Heart rate variability studies have been done that show that when her mother comes into the room and talks to her, her heart rate goes up,” he said.
He added there are videos from the family that demonstrate Jahi responds to her mother’s commands.
“This is in direct response to her mother’s voice. These are indications of a sentient being, not just a pound of flesh in a refrigerator,” he said.
“Something like that can happen with patients who are brain dead,” Magnus responded. “There’s still electrical activity going on. There’s still respiration going on. There’s still muscles that are being activated, so all that’s still taking place, so all that can still happen.”
But he said it’s really something people are seeing that’s not there.
An Argument of Awareness
“I’ve been involved in those cases where families just can’t understand the concept of brain death, and they don’t initially accept that their loved one has passed away or they struggle with that,” he said.
Magnus doesn’t see anything wrong with the current criteria for brain death and agrees the definition should remain in the hands of medical specialists.
“We’ve got a clinical practice that’s been around for decades, that seems to work very well, and when applied correctly, seems to yield no false positives,” he said. “It’s almost never a good thing when courts are involved in making clinical decisions for patients. Having courts make decisions for patients is just a recipe for disaster. They don’t understand enough medicine to really make informed decisions.”
However, the medical community isn’t fully united on what constitutes brain death.
One of Dolan’s experts, Dr. Calixto Machado, Ph.D., of the Institute of Neurology and Neurosurgery in Havana, Cuba, is spearheading a movement to make the “whole brain” approach the norm for medicine.
“I can assure you that when a physician and a neurologist do an EEG and see that there is certain electrical activity, it is going to be very difficult for this neurologist to say, ‘This patient is brain-dead,’” Machado told Healthline. “If you demonstrate that they’re releasing bioelectrical activity in their cerebral hemispheres, would you accept that, if you are using the whole brain formulation of death? I would not accept it.”
Ancillary tests are growing increasingly powerful and sensitive.
“The rate of advances over the last years is incredible,” said Machado. “What’s going to happen in the next decades?”
Luce feels the current definitions of brain death can stand, but as technology advances, it will raise more and more gray areas.
“I think the situation is fine the way it is now,” he said. “The complicating factor about [Jahi] is that the more sophisticated tests we develop, the more we’re going to find that the simple distinctions between these various states [are] very imprecise. The brain dead people are not as dead as we once thought they were, in the overall biological sense.”
So, what level of brain destruction is required for a person to be dead?
Some scientists take the higher brain approach, arguing that death of the cerebrum constitutes death of the self. This would mean that patients in a persistent vegetative state (PVS) would also be considered dead. Currently, vegetative patients are considered severely disabled, not dead, although their cerebrums have been partially or wholly destroyed.
The opposite can also occur. Patients who have an intact cerebrum but damage to the midbrain or brainstem can experience locked-in syndrome, in which they are fully conscious but unable to move, speak, or interact with the world. Some are capable of blinking their eyes to communicate, while others cannot move in any way at all. These patients can easily be misdiagnosed as being in a PVS.
Meanwhile, patients with less brain damage may find themselves in a minimally conscious state (MCS), a phrase that encapsulates a wide range of minor functions (or lack thereof). It’s also possible for a patient to spend months in a vegetative state, only to emerge into a minimally conscious state after their brain has had time to heal.
According to Dolan, Jahi doesn’t fit any of the existing categories. He reports that Machado is working on a paper, to be published before the end of the year, which will propose a new category of consciousness to describe Jahi’s as-yet-unseen circumstances.
A Range of Consciousness
Meanwhile, the dilemma of defining death cuts in both directions.
On one side of the equation, there’s the fear that people who are alive but severely disabled may be denied the medical care they need.
“What does society do with those people?” Luce asked. “We don’t believe that disabled people should be put away.”
On the other side: the right to die. Many people, such as Luce, feel that quality of life is just as important as presence of life.
“We have a revolution in biomedical ethics since we developed these life-sustaining technologies,” he said. “A lot of this stuff comes down to, how do you want to live? In most situations like [Jahi’s], the families wouldn’t want their loved one to remain on a ventilator, unresponsive, for presumably the rest of her life. I think as we learn more and more about the brain, there are many people — myself included — who value consciousness to the point that I wouldn’t want anything short of that. But there are people who think that where there’s life, there’s hope, and they consider [Jahi] alive.”
The diagnosis of brain death makes it easier to justify the removal of life support from what is, legally, a corpse with a heartbeat. Even if someone is in a PVS, they can still have nutrition withdrawn so they pass away, as was the case with Terri Schiavo.
This emphasis on personal wishes reflects another major shift in medicine.
“The cases … occurred in an environment where medicine was becoming less parochial,” explained Luce. “Doctors … made the decisions for people, people didn’t make their own decisions. Nowadays, we have a complete swing of the pendulum toward patient autonomy. We have a tremendous emphasis on patients making decisions for themselves.”
An Ethical Quagmire
Deciding who is and isn’t brain dead while the rest of the body is still intact is vital for another reason: organ donation.
The U.S. Department of Health and Human Services reports that in 2014, there were 123,851 people in the United States on waiting lists to receive organs, but only 29,532 transplants occurred (which were taken from 14,412 donors).
Each day, about 79 people receive organ transplants, but 22 die while still waiting for the organ they need.
However, for a transplanted organ to be as healthy as possible, it needs to come from a healthy body. A body that has suffered cardiac death will cease to supply its organs with vital blood-laden oxygen, causing them to quickly die as well.
But killing a patient by removing their organs is murder. The “dead donor rule” requires that organs essential for life can only be taken from someone who is already dead.
As long as there’s a diagnosis of brain death, though, doctors have a free pass. They can transfer the brain dead body out of intensive care and into a room next to the operating rooms where the organ recipients are waiting. Then, they remove life support, including the body’s ventilator. Without air, the body’s heart soon stops, after which its organs can be harvested immediately.
“If it did turn out that a qualified neurologist did an evaluation [of Jahi] and found that she’s no longer brain dead, that would be revolutionary and radical. It would ... have huge implications, including potentially ending one of our basic medical practices of cadaveric organ procurement,” said Magnus. “If we can’t tell if the brain dead patients are really dead, that means we couldn’t procure organs from them anymore. And if can’t do that, that means thousands and thousands and thousands of patients are going to die.”
For Dolan, this need for organs is part of the medical community’s resistance to changing the definition of death.
“In order to get parents and family members to agree with [organ donation], they have to convince them that this person is a nonsentient being, and truly not with us, so that that family can live with themselves,” he said.
Magnus advises caution.
“Now, if it turns out that that’s what the facts are, and [we] have to figure out [to] learn to live with it, we will,” he said. “But I would be very hesitant to do anything to upset that apple cart. Given the stakes, you really want to make sure that that’s correct, and you don’t want to do it based off something that’s second-rate like ancillary testing.”
The Other Issue: Organ Donation
Whether or not Jahi lives remains a question for the courts to decide.
And that won’t be an easy task, according to Francis Shen, J.D., Ph.D., professor at the University of Minnesota and executive director of education and outreach for the MacArthur Foundation Research Network on Law and Neuroscience.
The Future of Death
“Setting the definition is only half of the battle,” Shen said. “Because once a definition of death and brain death is in place, the law needs to determine what is reasonable to expect from medical professionals to apply that definition.”
“For instance,” Shen added, “if a medical doctor just looked at a patient and didn’t run any tests at all, that would be unreasonable. Should we require neuroimaging data for every evaluation? No, but there may be an increasing number of cases — that middle ground area — where a reasonable doctor would employ neuroimaging. And if this is the case, then the legal standard would adjust.”
He concluded, “So we’ll surely see cases like this again in the future. I hope that not only do we resolve this in a way that brings some closure to the family, but that we learn something from it as a legal system, and that we’re better suited to wrestle with it the next time around.”
The best way to avoid an end-of-life debate is to let your wishes be known.
“I believe that everyone should have a medical directive and designated surrogate,” said Luce. “I believe everyone should articulate their own belief system, their value system, in writing so that that could be used to make decisions for them later on if they couldn’t make decisions for themselves. That kind of information is very helpful to a physician. As an intensive care doctor, the issues we’re talking about are daily issues for me.”