Until Sept. 17, 2020, Sharon Frederick was an ostensibly healthy 63-year-old woman who spent her days caring for her disabled sister and going to church. That evening, she was praying the rosary over the telephone with a friend when she began slurring her words. By the time an ambulance delivered her to St. Elizabeth Medical Center in Utica, New York, Frederick was comatose after suffering a massive stroke.
Four days later, a physician declared her to be brain dead, and a death certificate was filed. Before she fell ill, however, Frederick had appointed two friends to act on her behalf if she were ever unable to make her own health care decisions. Her friends protested the diagnosis by filing a lawsuit that sought to void the death certificate and require the hospital to continue providing treatment. For nearly six weeks, a ventilator and feeding tube kept Frederick's body functioning while state and federal judges sorted out a crucial question: Was she dead or alive?
Resistance to the diagnosis of brain death is increasing, said Thaddeus Pope, a bioethicist and professor at the Mitchell Hamline School of Law in Minnesota who tracks brain death litigation. Over the past few years, highly publicized lawsuits have stirred skepticism among advocates and family members of those who have been declared brain dead. Some reject brain death on religious grounds, while others hold out hope that their loved one might somehow recover. Even among physicians, there is disagreement about exactly what constitutes brain death, and hospitals across the country have different protocols in place for making a diagnosis.
These conflicts threaten to undermine the entire concept of brain death and limit physicians' authority to determine who is dead, said Ariane Lewis, a neurocritical care physician at New York University Langone Medical Center. She and others pushed for a formal review — now in its preliminary stages — of the Uniform Determination of Death Act, the standard for brain-death determination in the U.S. since the early 1980s. Lewis acknowledges the concept of brain death is not just a medical issue, but also a legal, religious, and societal one.
"That being said, for the sake of society, there does need to be common ground as to how death is defined," she said.
The current standard defines brain death as "the irreversible cessation of all functions of the entire brain, including the brainstem," which connects the brain to the spinal cord and plays a critical role in regulating heartbeat and sleeping. Brain death is different from a coma, where the loss of brain function is temporary. Brain death also differs from a persistent vegetative state, where a patient is permanently unconscious but able to breathe without assistance.
The public has trouble distinguishing between these diagnoses, in part because of misinformation from news media, television shows, and movies, says Lewis. For example, a character on a show might be described as being brain dead yet still on life support, implying they are still alive. "That is obviously confusing," Lewis said. "Or there's misleading information like the phrase 'recovery from brain death.'"
Before the 1950s, such confusion did not exist because there was only one way to die: cardiopulmonary death, which occurs when the heart stops beating. The introduction of mechanical ventilators allowed patients to keep breathing even when the brain was too impaired to sustain it. That created, for the first time, the problem of what to do about patients who would never regain consciousness and were unable to breathe on their own. Should they remain in intensive care units, attached to ventilators until their hearts stop beating?
About the same time, organ transplantation was emerging, creating a need for organ donors that soon started pushing up against ethical boundaries. In response to these concerns, an ad hoc committee at Harvard Medical School published a report in 1968 saying a patient should be declared dead if, over a 24-hour period, the person displayed no response to stimuli, no spontaneous movement or breathing, no reflexes, and no brain function, as confirmed by a test that measures activity in the brain. That meant a patient who met these "Harvard criteria," as they became known, could be declared dead before their heart stopped beating, allowing organs and tissues to be removed before being damaged by the lack of blood flow.
The Harvard report carried no legal weight but, as the concept of brain death gained traction, states started codifying it into their laws. There was no consistency among the states, however, and by the late 1970s, policymakers recognized that the nation needed a uniform definition of death. In 1981, a presidential commission proposed the Uniform Determination of Death Act, which says a person is considered legally dead when their breathing and circulation have irreversibly stopped or when their entire brain has irreversibly stopped functioning.
The Uniform Determination of Death Act is not a federal law but rather a model statute recommended for each state to adopt. Today, every state recognizes brain death, yet the issue is far from settled. For one thing, only about two-thirds of states adopted the complete language of the act. Beyond that, state-level court decisions and legislation have created a patchwork of rules, so that brain-death examinations are handled differently in different states. The result is that the fundamental concept of death depends upon where a person is located. Some states allow family members to opt out of having a brain-death examination performed on a loved one, regardless of the person's neurological status. Moreover, in New Jersey — but only New Jersey — a person who has been determined to be brain dead cannot be declared legally dead without the family's consent.
"The line between life and death needs to be bright and clear and sharp, and unfortunately, it's now a little bit gray and a little bit fuzzy," Pope said. "We need, as some might say, to build a wall between life and death."
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In their lawsuit, Sharon Frederick's friends — Carol Thomas and Gina Antonelli — cited Frederick's living will, which expressed her devout Roman Catholic faith and her belief in life support. The friends also expressed deep mistrust of the hospital, accusing the facility of failing to provide basic nutrition to Frederick for the five days following her admission.
"The hospital is planning to remove Sharon's ventilator this afternoon at 4:00 p.m. over the objections of her health care proxies," Antonelli wrote to the judge on Oct. 30. "Sharon is stable and she doesn't require special medications," the letter read. "She tears up when her sister and friends pray the Rosary with her. We believe that Sharon deserves at least the chance to heal from her injury."
Judges in state and federal courts in New York ultimately rejected the request for a temporary restraining order and the hospital was allowed to disconnect Frederick from the ventilator.
Reports of alleged recovery from brain death are easy to find, but that doesn't mean they are true. "There has never been a patient who has been correctly diagnosed as dead by neurological criteria who has ever definitively regained consciousness," said Robert Truog a professor at Harvard Medical School and director of its Center for Bioethics.
Some experts consider Jahi McMath to be a possible exception. In 2013, McMath, a 13-year-old girl in Oakland, California, experienced complications following a tonsillectomy and was eventually pronounced brain dead. The teenager's mother fought the diagnosis in court, citing her Christian faith, and received permission to move her daughter from California to New Jersey, which allows a religious exemption to a brain death declaration. For nearly five years, McMath's body was supported by mechanical means until her heart stopped beating in 2018.
Death certificates are on file in both states, and there is no consensus about whether the girl was alive or dead during her years in New Jersey. Some experts, having viewed videotapes made by her family, agree that McMath sometimes responded to simple motor commands; others say no indisputable evidence of life was ever presented. Truog considers the evidence inconclusive. What is clear, he says, is that publicity about the girl's long, sad saga spawned "the McMath effect," an increasing incidence of family members refusing permission for the removal of machines that sustain other organs after a brain death diagnosis.
In some states, families are legally allowed to refuse consent for the examinations necessary to make a determination. In 2016, physicians at Saint Vincent Healthcare in Billings, Montana wanted to conduct an examination on 6-year-old Allen Calloway, who was pulled from a lake after being submerged for at least five minutes. His mother refused consent, and a court sided with her.
"They eventually transferred Allen home with mechanical ventilation, and as far as I know, he's still there today," Pope told an audience of physicians at Children's Hospital and Medical Center in Omaha, Nebraska last fall.
The most serious point of conflict, in Pope's view, is that the way brain death is determined in hospitals does not meet the requirements of the legal definition of the diagnosis. "We're supposed to be measuring total brain failure, but we're basically only measuring what you might call massive brain failure," he said.
Under the Uniform Determination of Death Act, brain death occurs with the irreversible stoppage of all brain function. But many hospitals use a set of guidelines developed by the American Academy of Neurology for brain-death determinations in adults; three other medical societies developed the guidelines used for children. Neither requires physicians to assess functioning of the hypothalamus, a part of the brain that helps regulate body temperature, blood pressure, and many other functions associated with life. That includes stimulating the pituitary gland, located just below the brain, which controls reproductive functions. Indeed, Jahi McMath went through puberty after being declared brain dead, and studies have shown that up to 91 percent of patients determined to be brain dead have hormonal function as long as their bodies have artificial support for breathing and nutrition.
Lewis believes the Uniform Determination of Death Act should be updated to align with American Academy of Neurology guidelines. This, she said, would provide clarity in cases like that of Aden Hailu, a student at the University of Nevada, Reno whom doctors determined to be brain dead in May 2015. Her father sued Reno's St. Mary's Regional Medical Center to prevent removal of the ventilator and feeding tube that maintained her biological functions. The case eventually worked its way to the Nevada Supreme Court, which ruled in November 2015 that it was "not convinced that St. Mary's had properly determined death."
The court offered several reasons for its ruling, including the fact that the hospital did not measure "all functions of the person's entire brain." The case was sent back to a lower court to be re-argued. Before it could, Hailu died of cardiopulmonary failure, leaving the legal question in limbo. (The Nevada legislature amended the state's law to match the American Academy of Neurology guidelines, but it is the only state that has done so.)
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The significant publicity around the McMath, Hailu, and other cases threatens to limit doctors' authority to determine death, encourage more families to seek court orders to continue organ support after a patient has been declared brain dead, and compel hospitals to use ventilators, beds, and other resources on the dead rather than the living, Lewis and Pope wrote in a 2017 article. Two years later, they took their concerns to the Uniform Law Commission, a non-partisan commission funded by the states to help them determine which areas of law could benefit from being made uniform across the country. Since last summer, a study committee created by the Commission has been considering whether the Uniform Determination of Death Act should be updated.
Nita Farahany, a professor of law and philosophy at Duke University School of Law, is serving as the study committee's reporter, responsible for supporting the committee members as they seek to understand how the current law works and explore ideas for improving it. At the end of this process, which will likely come this summer, the commission will vote on whether to draft an updated law, a process that would take another year or more to complete.
A particular challenge with legislation is that it can only provide a legal definition of death, while individuals have their own spiritual versions. "These are deep and difficult philosophical questions," Farahany said. "Technological advances that mechanically enable some of our biological functions to continue challenge us to ask: What is life? What is death?"
Sharon Frederick's friends had one answer to those questions. Neurologists, hospital administrators, and judges in three courts had another. She was buried in Utica's Calvary Cemetery on Nov. 13, eight days after a federal court judge authorized the hospital to withdraw feeding and breathing support. The first line of her obituary threads the needle: "Miss Sharon Frederick, 63, of Utica entered into rest September 21, 2020."