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It’s hard to imagine a more terrifying scenario than watching a loved one hooked up to a battery of life-support machinery and hovering in that murky space between theoretical survival and unalterable brain death — then having to decide whether it’s time to pull the plug. I’ve been spared that ordeal; Mom and Dad each died peacefully in their own bed. But recent reports suggest the process may be just as fraught for physicians. That’s partly due to the emotional toll it takes and partly because the medical protocol and ethical guidelines designed to govern these decisions remain in a surprising state of flux.

Last week, for example, neuroscientist Yelena Bodien, PhD, and her colleagues at Massachusetts General Hospital released a study that challenges the conventional timing of a physician’s discussion of a brain-damaged patient’s prognosis with family members. Typically, doctors will reveal the seriousness of the condition within 72 hours of admittance to the hospital, but Bodien’s findings, published in the Journal of Neurotrauma, suggest that conversation may be occurring prematurely.

Analyzing data from a national database of brain-injured patients, the researchers focused on 80 people who died after doctors pulled the plug and 80 who remained on life support. Nearly half of the latter group ultimately recovered sufficiently to enjoy a certain degree of independence. A handful even resumed a normal life.

Analyzing data from a national database of brain-injured patients, the researchers focused on 80 people who died after doctors pulled the plug and 80 who remained on life support. Nearly half of the latter group ultimately recovered sufficiently to enjoy a certain degree of independence. A handful even resumed a normal life.

“Delaying decisions regarding WLST [withdrawal of life-sustaining treatment] may be warranted to better differentiate patients who may achieve this recovery from those who are very likely to die or recover to a level of function that would be unacceptable to them,” Bodien writes.

Though it’s a small study, the findings are “really helpful,” Walter Koroshetz, MD, director of the National Institute of Neurological Disorders and Stroke, tells the New York Times. He notes that physicians are likely to provide a more thorough prognosis the longer they observe the patient’s condition. And though most people on life support do not recover, there are exceptions. “That’s the problem,” he says. “People can make a good recovery.”

The 72-hour time frame is not based on any scientific evidence, notes Claude Hemphill, MD, of the University of California, San Francisco. It’s simply become the norm because “these people look very sick when they come in [and] many physicians have felt compelled to make a decision early.”

Complicating the situation is the lack of a legal consensus on what actually constitutes brain death. As Max Kozlov reports in Nature, the definition — and the ability of family members to challenge a death determination — varies widely from state to state. California law, for instance, doesn’t allow family members to claim a religious objection to a physician’s ruling as a way of maintaining life support, but New Jersey statutes do.

A Chicago-based nonprofit, the Uniform Law Commission (ULC), sought to establish some consistent guidelines in 1981 by compiling a set of recommendations that led to the passage of the Uniform Determination of Death Act (UDDA), but advances in life-support technology, rising organ-transplant demands, and media coverage of patients kept alive for years have muddied the waters since then. For the past four years, a select committee of the ULC has been toiling away in an effort to upgrade the UDDA, but it’s foundering amid political polarization and scientific skepticism.

The first draft of the ULC’s proposed changes, released last summer, met with near universal criticism. The American College of Physicians argued that the recommendations would do more harm than good:

“Ironically, major changes in the UDDA like adopting a neurorespiratory standard, are not only wrong in our view, they could make such a ‘uniform law’ encourage less rather than more uniformity, leading to many states not adopting a revised law. In fact, some states might even adopt more stringent criteria for determining death.”

On the other end of the spectrum, clinicians argue that the ULC has not pushed hard enough to make changes. Robert Truog, MD, a bioethicist and pediatrician at Harvard Medical School who has been following the ULC’s work, says committee members have become too intransigent. “I thought this would be an upgrade, and it’s completely fallen apart from that perspective,” he says. “As soon as we talk about the deeper issues, the profound disagreement of some members of the committee becomes apparent, and you reach a standstill.”

In the intensive care unit, of course, it’s less about policy and politics than the raw emotions facing family members and physicians. As Sanjana Salwi, MD, writes in JAMA Neurology, brain death — however defined — creates a dismal interaction between the family’s fervent desire for a miracle and the physician’s responsibility to deliver the sad truth.

The young patient Salwi describes in her essay is beyond help, but when the parents ask whether their child is dead, she desperately wants to offer them some hope. “I ask if they want us to do chest compressions. They blink blankly at me. The confusion transforms to anger. They scream they want anything and everything to be done to keep their baby alive.”

Five hours later, the child is dead and Salwi is left with “a sea of profound grief.” She can’t blame the parents for their delusional hopes; she imagines how her own parents would handle such a calamity. And she acknowledges that debating the definition of death is a hollow endeavor.

“The difference between a ‘nonsurvivable’ injury and true brain death on examination means nothing to a parent,” she admits. “These are the semantics and legal lines we draw. Ultimately, we must find a way to balance giving families agency while limiting decisions that may inflict more violence and prolong suffering.”

Craig Cox
Craig Cox

Craig Cox is an Experience Life deputy editor who explores the joys and challenges of healthy aging.

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