What is the definition of death—and who gets to make the call? For decades, physicians have had the authority to declare a person brain-dead—defined in the U.S. as the irreversible cessation of all brain function, including the brainstem—even if heart and lung activity can be maintained with machines. The medical profession determined the acceptable tests and procedures used to make the diagnosis. But lately, the declaration of brain death has come under intense scrutiny. More families are challenging the determination of brain death in loved ones, and a small number of high-profile cases have sparked debate on social media and prompted some doctors to publicly discuss their definition of death.
In response to the public conversation around brain death, some doctors say they are encouraging patients’ families to observe when tests are conducted that help determines brain death. Meanwhile, some of the legal cases, especially the high-profile case involving 17-year-old Jahi McMath, has the potential to lead to a public reassessment of established legal and medical principles. Given the challenges to long-held standards, “we are concerned the concept of brain death is eroding,” says David Greer, chairman of neurology at Boston University School of Medicine.
Setting the standards
Legally, standards for determining brain death are largely left up to the medical community. The American Academy of Neurology, a professional society, established criteria for determining brain death in adults, and it urges all doctors and hospitals to follow the most recent 2010 guidelines. But recently published research indicates there is variability in how doctors and hospitals approach brain death. Some hospitals differ on how many physicians are required to administer the test, how long to wait between testing of brainstem reflexes and even the type of physician qualified to make the determination. Variability might lead to an inaccurate determination, some doctors say, further eroding public trust. Ariane Lewis, associate professor in neurology and neurosurgery at NYU Langone Health, says that all physicians need to understand brain death and follow professional guidelines. “Everyone should make the determination the same way,” she says.
In recent years, members of the medical community have been making efforts to improve training for doctors in dealing with brain-death cases—not only in making the declaration but in how they explain the diagnosis to families. The Neurocritical Care Society, a medical society whose members are involved in the care of patients with severe neurological illness, created an online Brain Death Toolkit that includes videos demonstrating different parts of the exam, sample brain-death policies that hospitals may adopt and answers to questions frequently asked by the public. At NYU School of Medicine, all medical students must now take a 90-minute brain-death training session created by Dr Lewis, learning about the medical and legal reasons behind the diagnosis and then practising on an intubated mannequin. The programme also includes actors who play the role of the patient’s spouse. In a study published earlier this year, 86% of those surveyed said they felt comfortable performing a brain-death evaluation after the training, compared with 18% before. Johns Hopkins Hospital established a support team comprising neurologists, neurosurgeons and critical-care doctors, specialists who typically have more training and experience in determining brain death, to help other clinicians make the diagnosis.
But improving the diagnosis of brain death doesn’t resolve what David Urion, a pediatric neurologist and co-chairman of the ethics advisory committee at Boston Children’s Hospital, says is a main driver of the current cases: The ethos of medicine has moved toward shared decision making on many issues, and some believe defining death should not be different. “Our thinking has evolved” about how doctors and families interact, says Dr Urion. “The climate has evolved.” For instance, it can be hard for a family to grasp that a beloved child with a catastrophic brain injury meets a definition for legal death when the child has a beating heart and skin that is warm to the touch. “The child sitting in front of them, from a practical perspective, doesn’t look dead,” says Dr Urion. “So how do we explain to them where it is we are coming from?”
To give families a clearer idea of what brain death means, doctors may encourage them to be present when tests to determine the condition are performed. These include assessing consciousness by putting pressure on fingernail beds or trying to determine brainstem reflexes by shining a flashlight in the eyes. Families may also be present when ventilator support is removed to see if the patient can spontaneously breathe. Dr Urion says doctors are discussing whether they should add a test called the four-vessel angiogram to the examination. It involves X-rays and dye to determine if there is any blood flow in vessels of the head and neck. It is not part of the standard brain-death examination, but Dr Urion says in light of the current tensions he thinks the test should be done routinely. Since without blood flow no tissue can survive, it might offer reassurance to both families and doctors that there is no brain activity. “Technology can help,” he says.
Lainie Friedman Ross, a pediatrician and professor of clinical medical ethics at the University of Chicago Medicine, has suggested, along with her colleague Robert Veatch, a professor emeritus of medical ethics at Georgetown, that people who fundamentally object to determining death using neurological criteria should have the right to state their perception of death, perhaps in an advance directive or a registry. Dr Ross believes states should adopt laws that would allow people to choose their preferred definition. One likely consequence would be that physicians wouldn’t do the brain-death examination if an individual doesn’t want death determined based on neurological criteria, she says. “For some of us, it is more about the quality of life rather than quantity of life,” she says. Others have religious objections to brain-death determinations. “A lot of what we are fighting over is what criteria should be used for determining when someone is dead,” she says.
Boston University’s Dr Greer says the definition of death isn’t something people can choose for themselves. The determination of death has wide-ranging consequences, including burial and inheritance, and whether a physician or hospital must continue medical treatments. Brain death, says Dr Greer, is “a person-made contrivance, but I call it a line in the firm sand, almost concrete.” Families holding out for a miraculous recovery might not allow patients to die with peace and dignity, he says. And there could be other unintended repercussions. Most organs in lifesaving transplants come from patients declared brain-dead; eliminating the concept or changing its definition might affect donation. “These patients have suffered a neurological catastrophe with zero hope for recovery,” Dr Greer says. “You cannot change their outcome. What does society stand to gain by undermining the concept of brain death?”
That said, Dr Greer acknowledges that the McMath case may present a challenge to that view. Jahi McMath, then 13, was declared brain-dead in 2013 following complications from surgery at Children’s Hospital Oakland, now called UCSF Benioff Children’s Hospital Oakland. The family has filed suits in the Superior Court of Alameda County and U.S. District Court for the Northern District of California seeking permission to present evidence that Ms McMath now demonstrates minimal brain activity and other brain function and is therefore no longer brain-dead. A spokeswoman for the hospital said it “cannot address specific allegations” because of health-care privacy laws, but that Ms McMath has not undergone a “valid brain death evaluation” that follows “accepted neurologic criteria” since she was declared deceased under California law in 2013. A trial on whether Ms McMath can pursue a personal injury claim is set for February in state court; as part of that case, the judge will have to determine if Ms McMath is still legally dead, lawyers for the family say. If the McMath family can conclusively demonstrate that she regained brain function and is declared alive again, “we can’t sweep it under the carpet,” says Dr Greer. “We were wrong about brain death.”
The definition of brain death was first introduced in the U.S. in 1968 by the so-called Harvard Ad Hoc Committee on Brain Death. The committee met at a time when advances in technologies such as mechanical ventilators raised the prospect of keeping people alive who could not open their eyes, speak or breathe on their own. Many people were uncertain if the new technologies saved lives or prolonged dying, explained Robert Truog, director of the Center for Bioethics at Harvard Medical School, at a recent conference marking the 50th anniversary of the Harvard report. At the time, society accepted that physicians were the ones with the power to determine death. The legal ramifications associated with death led a presidential commission in 1981 to propose the Uniform Determination of Death Act, which defined brain death as a legal form of death that states could then choose to enact into law. The commission largely left it to the medical community to determine the tests and procedures to follow, recognising that new technologies or changing attitudes might affect medical practices over time. Recent legal cases have challenged and possibly threatened established principles surrounding brain death. Thaddeus Mason Pope, director of the Health Law Institute and professor of law at Mitchell Hamline School of Law and someone who follows brain-death disputes, says families have made a number of different arguments, including strong religious or moral views that the only acceptable definition of death for them is when the heart and lungs permanently stop functioning. Others have argued that the brain-death examinations don’t measure the loss of every function of the entire brain as required by the Uniform Determination of Death Act. Social media has helped drive public attention to the legal cases and allowed families to connect with one another. Mr Pope thinks physician efforts to improve uniformity in brain-death determination are a good thing, but may not stop the rise in legal challenges. “Now people feel more empowered to stand up to their doctors, to challenge them on everything,” he says, “including the definition of death.”
Credit: Amy Dockser Marcus for The Wall Street Journal, 28 May 2018.