Jahi McMath’s tragic saga, like many other so-called “brain death” cases, has brought that question to the forefront of medical, legal and ethical attention. After a 2013 surgery for sleep apnea, she was in recovery when the surgery site began to bleed. Her medical team was unable to staunch the flow, and she died because of oxygen deprivation to her brain. That is, multiple experts determined she met the criteria for death by neurologic criteria and legally declared her dead.
Her family, however, saw that machines and chemicals successfully maintained other vital organs, including her heart, and refused to accept her death. They convinced a judge to release Jahi to a New Jersey facility, where her key organs were kept functioning for nearly five years. During that time, her family asserts, she reacted to stimuli and even moved through puberty — all inconsistent with how we normally understand death. Following a recent abdominal surgery, though, her kidneys failed and neither chemicals nor machines could keep her heart beating. This time the family accepted the reality of her death.
Throughout all this, the family has sought legal action to have the original death declaration reversed, a determination that should be decided in coming months. Regardless of that ruling, her case has forced the medical community to reconsider what it means to be dead and how death should be legally determined in the future. Such discussions will have to better distinguish the permanent cessation of consciousness — the capacity that makes living, engaging the world and the people in it, possible — from the permanent cessation of non-conscious bodily activities.
If this seems confusing, imagine being the family of someone who has been declared dead, but whose heart beats, whose chest rises and falls and whose skin is warm — again all due to technological interventions. Imagine further reading a headline like, “Girl Declared Brain Dead After 2013 Tonsillectomy Dies.” Dead girl dies?
Or: “Jahi McMath, Pronounced Dead Years Ago, is ‘Healthy’ New Photo Claims.” As much as we might wish otherwise, dead people cannot also be healthy.
One more: “Brain-Dead California Girl, Family Living in Franklin Township, Court Documents Show.” Dead persons cannot also be living — in New Jersey or anywhere else.
Physicians across the country, in fact, are reporting a relatively new phenomenon dubbed the “McMath Effect.” Families of neurologically dead loved ones are increasingly citing such stories and refusing permission for the removal of machines that sustain heart and lungs. While we wish to be compassionate to such families, the result – keeping a dead body’s organs functioning – is distressful to staff and resource intensive, and it at least arguably violates the dead person’s dignity. As a result, hospitals are being forced to revise their policies for how to manage resistant families.
While McMath’s case is among the most gripping, this issue and problematic coverage of it goes back for decades. For example, in 2005 the Californian covered the story of an inmate who died after being hit by a foam bullet during a prison-yard altercation. Like McMath, doctors declared him dead by neurologic criteria, but only after he was connected to organ-sustaining machines. The department of corrections then made everything worse by insisting that his body be shackled to his ICU bed and that he be guarded 24-hours a day. No surprise, the family rejected the death declaration — “If he’s dead, why is he restrained and guarded?” — and sought legal action to keep the machines attached.
Among the head-scratching headlines was this doozy from the Californian: “Brain-dead inmate’s family seeking his early release,” followed by the opening sentence: “The Wasco prison inmate left brain dead after being shot in the head by a guard may be released from custody before the end of his sentence.” But of course the only place to which a dead person can be “released” is the morgue.
We admit these issues are confounding, even for health care professionals. We routinely cringe upon hearing a physician inform family members, “Your loved one has died but is being kept alive by a breathing machine.” Or when a physician reports that the patient “while not technically dead, is essentially dead,” a statement that is all too reminiscent of Miracle Max’s declaration in “The Princess Bride.” He informs Westley’s mourning friends not to worry, he “is only mostly dead,” after which he is brought back to mostly alive.
As these examples reveal, health care professionals and members of news media can perform a real service by striving for absolute clarity in language choice. Avoid such phrases as, “Dead but being kept alive by …” or “Dead but on life support.” Even worse: “Once dead, dies again.” We would even recommend dropping “brain death” language altogether. Rather, simply state the person is dead. If more clarification is needed, “declared dead by neurologic criteria” is sufficient.
These situations are always fraught with grief and turmoil. But we can reduce both by more careful language use.
A version of this essay was originally published by the USC Annenberg Center for Health Journalism.
Paul Schneider, MD, FACP, is chairman of the Southern California Bioethics Consortium and a health sciences clinical professor at the UCLA School of Medicine. Christopher Meyers, PhD, is a professor emeritus of philosophy and director emeritus of the Kegley Institute of Ethics at CSU Bakersfield and hospital ethicist at Kern Medical.