Providers Beware: Debate Grows Over When Death Is Really Death

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By Mary Anne Pazanowski

Health-care providers increasingly are facing thorny legal and ethical issues about one of their standard measures of death.

Is a person who is clinically brain dead really dead? For decades the answer has been yes, but people are starting to rethink that. If the answer now is no, do hospitals and health systems have an obligation to continue life-sustaining treatment?

This is a critical question, because caring for a patient who has been declared brain-dead can be pricey. Richmond, Va.'s VCU Health System Authority, in a petition to the Virginia Supreme Court, estimated the cost of caring for a nonresponsive toddler in the pediatric intensive care unit at $10,000 per day. It also means one less bed would be available for another child in need of care.

Families and groups that advocate for life at all stages, like the Life Legal Defense Foundation, argue that economics shouldn’t factor into the decision. Brain dead patients aren’t necessarily dead, and so long as their bodies can survive on artificial means, providers should keep them going, they say.

Legislative action taken in Nevada and litigation playing out in California could provide hospitals with some guidance.

Existing Standards

The Uniform Declaration of Death Act (UDDA), which most states have enacted, defines death as the “irreversible cessation of circulatory and respiratory functions” or the “irreversible cessation of all functions of the entire brain, including the brain stem.” This determination “must be made in accordance with accepted medical standards.”

The criteria developed by the American Academy of Neurology (AAN) usually are used by medical professionals to determine death. The AAN standards require doctors to examine the patient to determine such things as coma and lack of responsiveness, core temperature, systolic blood pressure, absence of brain stem reflexes, and apnea, or the inability to breathe without assistance. The AAN standards don’t require the total absence of brain waves, as measured by an electroencephalogram (EEG). A patient, therefore, could be brain dead according to the AAN guidance but not necessarily have a total cessation of brain function.

A debate is growing over this mismatch between the legal (statutory) standards and the medical standards that will challenge health-care providers to determine exactly how brain death should be used as a measure of death, and whether the UDDA standard or the AAN criteria for ascertaining death still are appropriate.

Clarifying Standards

The Nevada Supreme Court in a 2015 opinion noted the discrepancy between the UDDA and the AAN standards. Its decision prompted the state Legislature to amend its version of the UDDA to clarify that doctors must use the AAN standards.

College student Aden Hailu experienced a medical emergency. Using the AAN standards, doctors determined that Hailu was brain dead. Hailu’s father, Fanuel Gebreyes, sued to stop the hospital from ending her life support.

The state supreme court blocked the hospital from removing Hailu from the machinery that was keeping her body alive, noting that physicians at the time the state adopted the UDDA used standards known as the Harvard criteria, not the AAN standards ( Gebreyes v. Prime Healthcare Servs., LLC, , 2015 BL 376967, Nev., No. 68531, 11/16/15 ). It invited the Legislature to clarify the law. The Nevada UDDA now says the AAN criteria should be used to determine brain death, as they represent the prevailing medical standards.

Hailu died before her case could be retried by the trial court.

Nevada was the first state to clarify the law in this manner, Thaddeus Mason Pope, a nationally recognized expert on end-of-life issues, told Bloomberg BNA. Pope is a bioethicist and director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn.

The UDDA is a uniform law—that is, a law intended to be interpreted uniformly by all the states that have adopted it—so the change could raise concerns for people outside Nevada, he said. The case could prompt challenges in other states mirroring the concerns raised by the Nevada Supreme Court. How the courts would handle those challenges isn’t certain at this point, Pope said.

Interestingly, the Nevada Legislature didn’t amend the portion of the law that says brain death occurs when there is an irreversible cessation of all brain functions, so patients’ families still could argue that a person who doesn’t meet that standard isn’t dead.

Leading Edge Case

Jahi McMath’s situation brought the issue of brain death as a measure of death to the forefront of national consciousness. Multiple lawsuits in state and federal court represent the leading edge of litigation over whether a person declared brain dead actually is dead.

In December 2013, the then-13 year old McMath suffered cardiac arrest, stopped breathing, and was placed on a ventilator after tonsil surgery at Oakland Children’s Hospital. Two days later, doctors declared McMath brain dead, using the California Uniform Declaration of Death Act (CUDDA) and AAN standards.

Several lawsuits followed, including one to prevent the hospital from ending McMath’s life-sustaining treatment. Her family negotiated a solution with the hospital and moved her to a long-term care facility outside her home state of California.

McMath’s family, on her behalf, later sued her health-care providers in state court, seeking damages for the injuries that led to her nonresponsive state. The providers moved for pretrial judgment, saying McMath can’t succeed because she is dead, and only the living can recover personal injury damages. The California Superior Court, Alameda County, denied the motion.

The court Sept. 5 said McMath and her representatives could have a factfinder—usually a jury but sometimes the judge—decide whether McMath should be reexamined to see if the cessation of brain function diagnosed by doctors in 2013 has been reversed. If so, then she no longer meets the CUDDA’s definition of death ( Spears v. Rosen , Cal. Super. Ct., No. RG15760730, 9/5/17 ).

Resolution of this disputed question will determine whether McMath can proceed on the personal injury claim. Alternatively, her representatives are seeking damages for wrongful death. Discovery is proceeding in the case.

Not Surprising or Revolutionary

The trial court’s decision was neither surprising nor revolutionary, Pope told Bloomberg BNA. To defeat a motion for pretrial judgment, called summary adjudication in California, a party need only produce some evidence that supports his or her position.

McMath and her family produced a pediatric neurologist’s affidavit stating there was “no question” in his mind that McMath no longer met the CUDDA standard. If McMath is responding to outside stimuli, as her caregivers testified, then she didn’t suffer an “irreversible cessation of all functions of the entire brain, including the brain stem.”

Pope told Bloomberg BNA the caregivers’ testimony may not be the “best” evidence, but it made the question of whether McMath still meets the statutory definition of death a disputed material fact.

Pope said this is the first lawsuit he knows of in which a personal injury claim was raised by a person previously declared brain dead. It is “unique in legal and medical history,” he said.

‘Messy’ Case

McMath’s is a messy case, Tom Mayo, a medical ethicist and professor at Southern Methodist University Law School in Dallas, Texas, told Bloomberg BNA. Mayo is a Bloomberg BNA advisory board member who studies and advises hospitals about difficult end-of-life issues.

McMath’s arguments are playing out in the context of personal injury litigation, but her extremely rare circumstances raise the question of how brain death should be used as a measure of death. The case potentially could be “really disruptive,” Pope said.

Mayo said the public is beginning to “develop skepticism” over brain death. There is anecdotal evidence, for example, of patients responding to external commands or stimuli after having been declared brain dead.

The amount of activity observed in people who have been declared brain dead, however, varies. A certain amount of brain activity also occurs on a cellular level, even after cardiopulmonary functions cease, Mayo said.

Mayo told Bloomberg BNA that “death may be an unwarranted assumption” when a person is declared brain dead under existing legal and medical standards. Still, brain death has been a “serviceable concept for decades,” and it is difficult to see what might replace it, he said.

Religious Objections

Pope told Bloomberg BNA that more families are bringing legal action to stop the termination of life-sustaining care on religious grounds. Jonee Fonseca, for example, stopped a hospital from ending her son’s treatment after he was declared brain dead following a severe asthma attack.

Fonseca’s son died in August 2016, but she already had sued California officials in an attempt to have the CUDDA declared unconstitutional.

The U.S. District Court for the Eastern District of California Sept. 22 dismissed Fonseca’s complaint. It said she didn’t have standing because she couldn’t show a causal relationship between the CUDDA and her son’s death ( Fonseca v. Smith , 2017 BL 338938, E.D. Cal., No. 2:16-cv-889, 9/22/17 ).

Fonseca argued that the CUDDA caused the doctors to declare her son brain dead and withdraw life support. Both links in this causal chain were speculative, the court said, because the CUDDA doesn’t bind doctors to end life support. Doctors make the decision using their independent medical judgment, usually in consultation with the family, it said.

The court also said the Life Legal Defense Foundation didn’t have associational standing to sue the state. LLDF’s causation argument, like Fonseca’s, was frustrated by the independent actions of third-party doctors, it said.

The LLDF also failed to establish a substantial likelihood that declaring the law unconstitutional would remedy the frustration of its mission to protect life, the court said.

No More Bright Line

On a practical level, Pope suggested that health-care providers do a better job of explaining brain death to patients’ families. Most of the existing tools for explaining the concept were developed by organ procurement organizations, so it is easy to see why people might perceive them as biased, Pope said.

The odds are that an individual health-care provider will never be called on to address these issues, Pope noted. Controversies over brain death are extremely rare. Millions of people die every year. Only a few thousand cases involve brain death, and in very few of those is any objection made when caregivers suggest turning off life support.

If McMath wins the right to pursue her personal injury case, however, the debate likely will escalate. Brain death used to be a bright line, Pope said. Now, the line is “getting blurry,” and these cases aren’t as easy as was once thought, he said.

To contact the reporter on this story: Mary Anne Pazanowski in Washington at

To contact the editor responsible for this story: Peyton M. Sturges at

For More Information

The opinion in the McMath case is at .The opinion in the Gebreyes case is at The opinion in the Fonseca case is at

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