Brain dead: Why diagnosis is so troubling, confusing

May 27--Brain dead. The two words are ominous, frightening, final. And often so misunderstood.

As a medical diagnosis, brain death is relatively straightforward, determined by standardized tests widely accepted by doctors and hospitals across the country since the early 1980s. But in some cases, a brain death pronouncement becomes tangled in emotional, religious, legal and financial issues that can be traumatic for all sides.

"It's always been a persistent problem," said Arthur Caplan, director of medical ethics for the New York University School of Medicine, who has written extensively on the subject. "People in hospital settings can misuse terminology. Or someone hears their loved one is 'brain dead' and they think, 'Well, maybe the rest of him is still alive. Maybe he can recover.' "

Neurologists and physicians who routinely encounter brain-dead patients have no doubts or reservations about the validity and finality of the diagnosis. Despite stories shared online or reported from other countries, most say emphatically that there are no known case of anyone recovering after brain death.

"It's the end of life. It's not just my opinion. It's law and widely accepted among all neurologists," said Dr. Wade Smith, director of neurologic intensive care at the University of California, San Francisco, who has dealt with numerous cases of brain death.

The issue grabbed headlines recently in Sacramento during a monthlong court battle between the Kaiser Permanente Medical Center in Roseville and parents fighting to keep their 2-year-old on a ventilator after doctors declared him irreversibly brain dead on April 14.

In his case, three separate physicians -- one from UC Davis Medical Center and two from Kaiser Roseville -- declared young Israel Stinson clinically brain dead. But his parents, Vacaville residents Jonee Fonseca and Nathaniel Stinson, believe he can partially recover. Backed by pro bono attorneys and an out-of-state physician, they sued the hospital, saying they don't believe their son is dead until his heart stops beating.

For years, making the call on a patient's death was obvious and simple: Breathing stopped and a heartbeat ceased. But in the 1960s and '70s, as medical technologies enabled machines to artificially keep those functions going, it became clear that the old definition was outdated.

"Such artificially maintained bodies present a new category for the law (and for society), to which the application of traditional means for determining death is neither clear nor fully satisfactory," stated a 1981 U.S. presidential commission that revised the definition of death.

In a lengthy report that touched on the religious, philosophical and sociological aspects of how Americans view death, it noted that the heart, lungs and brain are integrally entwined. "When an individual's breathing and circulation lack neurologic integration, he or she is dead."

It went on to state: "He or she will experience no pleasure or pain, enjoy no social interaction, and be unable to pursue or complete his or her life's projects. Why, then, is there an ethical issue over discontinuing medical interventions? For many, there will be none. As with all dead bodies, it is appropriate to discontinue interventions -- indeed, it is usually inappropriate, on both practical and moral grounds, to continue to intervene."

The commission recommended two options for determining death: either cessation of respiration and cardiopulmonary function, or an irreversible loss of brain function. The recommendations were finalized in the Uniform Determination of Death Act, a model law widely adopted by individual states.

What makes the diagnosis hard to accept, say doctors, is that machines can keep a patient's skin warm, their color seemingly healthy and their heart artificially beating, giving the appearance of being alive.

Adding to the confusion over brain death diagnoses are the varied states of brain injury: coma, persistent vegetative state and brain dead.

In a coma, patients are essentially unconscious with eyes closed but have brain function. They can recover and awaken at some point, sometimes years later. In a persistent vegetative state, brain function is impaired but the brain stem is intact, meaning patients can breathe, digest food, track motion with their eyes and respond to some stimuli. Brain death is the permanent, irreversible loss of brain function, including in the brain stem.

Despite decades of acceptance in the medical community, some object -- on religious or other grounds -- to brain death, saying it is not the same as cardiopulmonary death.

"The Stinson family believes -- as I do -- that only God can take away life and that once a person receives life-sustaining treatment, it is not ethical to remove that treatment, even when the patient has a poor prognosis," said John A. Nash, an associate professor at Beulah Heights University, a religious college in Atlanta, who said he has known the family for many years.

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Mother of toddler declared brain dead: 'I know you're going to come out of this'

Jonee Fonseca tickles her 2-year-old son, Israel Stinson, while he breathes through a ventilator at Kaiser Permanente Medical Center in Roseville. The toddler was declared brain dead by three physicians at Kaiser and UC Davis, following a hospitalization on April 1 for severe respiratory complications that led to cardiac arrest. This video, used by permission from the family attorneys, was posted on YouTube and the couple's gofundme page, "Save Israel's Life."

Israel Stinson family, used by permission

The case also relied on the assessment of an out-of-state physician, Dr. Paul Byrnes, who testified in court documents that Israel "may achieve even complete or nearly complete neurological recovery" if given nutrition and medications. Byrnes, who is not licensed to practice medicine in California, said he observed Israel at Kaiser Roseville several times. "Brain death is fake death," said Byrnes, who is part of the nonprofit Life Guardian Foundation, a Catholic-based organization that believes only God determines when we die.

Determining that brain death has occurred involves a series of specific tests recommended by the American Academy of Neurology. They include checking for: pupil reaction to bright light; a gag or cough reflex using a tongue depressor at the back of the throat; eye movement when cold water is injected into the ear canal; and facial movement in response to heavy pressure on the forehead or fingers.

The final measurement is typically an apnea test where the ventilator is removed for as long as eight minutes to see if the body spontaneously takes a breath on its own. If it does, indicating there is brain function, the ventilator is replaced and the test can be repeated later.

Brain death tests are typically done by two physicians, independent of one another. If they concur and a brain death diagnosis is issued, some states, including California, require that family members be given "adequate time" to gather and say goodbye to a loved one.

New Jersey is the only state that specifies by law that parents or other family can object to a brain death diagnosis on religious grounds. If there's proof that religious beliefs are valid, the patient can remain on a ventilator until his or her heart stops.

The Stinsons' court case abruptly halted last weekend, when Israel and his parents were flown -- using donated funds -- on a medical ambulance to an undisclosed country where he is reportedly receiving nutrition through a feeding tube. They hope to return him to the United States within two weeks and seek long-term care either at home or in a nursing facility.

That's similar to the case of Jahi McMath, an Oakland teenager who was diagnosed with brain death after surgery for sleep apnea in 2014. For the past two years, she's been on a ventilator and receiving care in New Jersey. Her mother recently sued state and Oakland hospital officials, seeking to overturn her brain death diagnosis so McMath can return to California for care.

On Thursday, Napa attorney Alexandra Snyder, of the Life Legal Defense Foundation, one of several nonprofit law firms representing Israel's family, said the toddler is showing improvement, based on reports from his parents and the pediatric specialist treating him. (For privacy and security reasons, the family has declined to state the foreign country where he is being cared for.) Snyder said the 2-year-old was supposed to undergo a tracheostomy on Thursday to insert a breathing tube and possibly get a regular feeding tube through the stomach.

"He's had an EEG that showed brain waves, his pupils are starting to dilate a little bit," Snyder said. "For the family it's very encouraging. They're remaining cautiously optimistic of some type of recovery. Exactly what that looks like nobody knows."

Snyder said Israel's parents hope to return once he is stabilized and they can find a facility willing to take him. Because he's been declared dead in California, it's unclear whether his care would be covered by insurance. "We're in uncharted territory here," Snyder said.

Although the parents' lawsuit was essentially closed once they took him outside the U.S. for treatment, the family's attorneys have said they are willing to press further. Israel's case raises "serious questions about the constitutionality" of California's uniform death act, said attorney Matthew McReynolds of the Pacific Justice Institute in an emailed statement Monday. "It has become clear that declarations of brain death do not always reflect medical consensus and do not comport with basic notions of due process. These legal claims have not been mooted, and we will be evaluating how best to pursue these important constitutional questions."

Medical ethicist Caplan emphasizes that of the "hundreds of thousands" of deaths in hospitals each year, only a tiny number involve family objections to brain death. He said he believes courts are not the appropriate venue to decide such science-based issues.

"Courts are not places where medical and scientific facts get decided," he said, saying those issues should be determined in medical journals, scientific conferences and academic settings. He said the brain-death issue also raises public policy questions such as who should pay for the care of patients who are declared brain dead and could conceivably remain months if not years on a ventilator.

"It's a doctor's determination," Caplan said. "That's always been the case about death."

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Parents of brain dead toddler fight to keep him on life support in Roseville

Nathaniel Stinson and Jonee Fonseca, the parents of 2-year-old Israel Stinson, are fighting to keep him on life support at Kaiser Permanente in Roseville. The toddler suffered cardiac arrest April 1, 2016, following an asthma attack and has been declared irreversibly brain dead by three physicians.

Claudia Buck The Sacramento Bee

Claudia Buck: 916-321-1968, @Claudia_Buck

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