McMath saga shows why reporters need to be clear about ‘brain death’ cases

Just what does it mean to be dead?

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 as a result of oxygen deprivation to her brain. That means 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 that she had died. They convinced an Oakland judge to release Jahi to a facility in New Jersey, where her body was kept functioning for nearly five years — an unusual but not unprecedented length of time for a brain dead person. In her case, however, her family reported that Jahi continued to react to stimuli and that she even moved through puberty — all inconsistent with how we normally understand death. Following a recent abdominal surgery, 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. The law has yet to draw a distinction between the permanent cessation of consciousness — the capacity that makes living, engaging the world and the people in it, possible — and permanent cessation of all 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 that they read a headline like, “Girl Declared Brain Dead After 2013 Tonsillectomy Dies.” Dead girl dies? What?

Or this one: “Jahi McMath, Pronounced Dead Years Ago, is ‘Healthy’ New Photo Claims.” Beyond that a photo cannot claim anything, we are pretty sure dead people cannot also be “healthy.”

One more: “Brain-Dead California Girl, Family Living in Franklin Township, Court Documents Show.” Californians are special people, but even we cannot be both dead and living — in New Jersey or anywhere else.

Physicians across the country are reporting a relatively new phenomenon dubbed the “McMath Effect.” Upon being told their loved one has suffered irreversible and whole brain damage, and thus is legally dead, families are increasingly citing such stories and refusing permission for the removal of machines that sustain other organs. Such a refusal, however, comes with problems: It is very distressful to staff, it is resource intensive, and it at least arguably violates the deceased 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 Bakersfield 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 medical personnel got to him very quickly and his body was sustained through medical interventions. The department of corrections then made a bad situation worse by insisting that his body be shackled to his ICU bed and that he have two 24-hour armed guards. No surprise, the family was distrustful of 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 of the lede: “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 or the afterlife.

We admit these issues are confounding, even for some health care professionals. We routinely cringe, for example, at hearing a physician inform family members, “I’m sorry to tell you that your loved one has died but is being kept alive by a breathing machine.” Or when a physician reports, as one did during a recent ethics consultation, that the patient “while not technically dead, is essentially dead.” That statement was all too reminiscent of Miracle Max’s declaration in “The Princess Bride” that a seemingly deceased Westley “is only mostly dead,” after which he is brought back to mostly alive. We need to do a much better job in teaching health care professionals how to use precise language.

Similarly, 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 that you not use “brain death” language. 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.

Paul Schneider, M.D., chairs the Southern California Bioethics Consortium and is a health sciences clinical professor at the UCLA School of Medicine. Christopher Meyers, Ph.D., is professor emeritus of philosophy and director emeritus of the Kegley Institute of Ethics at CSU Bakersfield. 

[Photo by Ewan via Flickr.]