Declaring death used to be simple: The deceased turned blue and stiff. The heart became inaudible, the pulse faded and the chest stilled.
That's not Jahi McMath's story. The 13-year-old Oakland girl's skin is still soft and warm. Her pulse still strong. And her lungs fill with air.
Advances in modern medicine are complicating her final chapter, sustaining her heart but unable to revive her brain. As she lingers in the Intensive Care Unit at Children's Hospital Oakland after lethal complications from tonsil surgery -- dead, according to five medical evaluations, but seemingly asleep -- the beloved girl has become the subject of a wrenching conflict that is drawing national attention as it spins into a court battle to keep her heart beating.
For a society that invests the beating heart with such symbolic importance, it can be difficult to accept medicine's now-universal definition of death: loss of all brain function.
"That is such a very, very hard thing to come to terms with -- to understand, and make peace with," said Ryan Holmes, assistant director of Health Care Ethics at Santa Clara University.
And it's doubly hard to accept when that final verdict is delivered by the same hospital that is accused of botching a procedure, said experts. Jahi was declared "brain-dead" on Dec. 12, three days after seemingly routine surgery.
Her stunned family is challenging Children's Hospital's determination of death -- based on an evaluation of five doctors, two hospital-based and three independent -- and is demanding the hospital continue sustaining their child's body. The final search for any sign of brain activity will be made on Monday by a court-approved doctor, selected from a list of neurologists at UC San Francisco. The findings will be presented in court on Tuesday.
The advent of artificial respirators, specialized medical teams and intensive care units can seemingly keep "alive" patients who have lost all brain function and who, without artificial support, would have no breath, pulse or circulation.
"The same technology that is used to keep someone alive is also being used to sustain the functions of the body of a person who has died," said bioethicist Nancy Berlinger of The Hastings Center, co-author of the book "Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life."
"That is just so tough to wrap our heads around, especially when it is a child. ... The family needs compassion, support and a trusted truth-teller."
The family of Hiram Lawrence, a 23-month-old shot in the head outside a West Oakland liquor store in November 2011, unsuccessfully fought to keep his heart beating long enough to celebrate his second birthday and the holidays.
"It was pure hell," Hiram's aunt, Annette Jointer, said this week. "You spend so much energy fighting with the hospital that you almost can't be present for your sick loved one. It felt like it was a battle of wills."
The family brought in their own doctor, who performed a test to see if Hiram would react to a shot of water in the ear. The boy didn't move.
"That was one of the worst days of my life," said Oakland Pastor Rosevelt Taylor, who spent the 11 days with the family at Children's Hospital Oakland. "If it comes back negative, then that's it. I pray and I feel for anybody that has to go through that."
The brain is the organ most vulnerable to loss of oxygen. It suffers permanent damage if its blood supply is interrupted for more than a few minutes. Jahi's surgery initially appeared to have gone well, but then she went into cardiac arrest and was deprived of oxygen, according to her family. For ten days, the hospital has kept her on mechanical support but under California law 1254.4 "has no duty ... to continue medical intervention," the hospital's lawyer wrote, because "tragically, Ms. McMath is dead and cannot be brought back to life."
There are times that hospitals do decide to keep dead people on machines. For instance, they may seek to sustain organ donors or pregnant women until birth.
And California law allows "reasonable accommodations," usually just several days, to be made to allow families to travel long distances to gather in a hospital room. "It is a better place than the morgue," said Arthur Caplan, head of the Division of Medical Ethics at NYU Langone Medical Center.
But hospitals seek time limits. High-tech intensive care units are designed for those with a chance of recovering. Prolonged care of the dead is traumatizing for health care workers too, experts said.
It is also expensive. Hospitals can't discharge the deceased, because nursing homes won't accept them. And because private and government insurers only cover the costs of the living, not the dead, hospitals must cover the expense.
For millennia, death was defined by heart stoppage. In 1968, a Harvard University committee proposed adding "brain death" to "cardiac death" in end-of-life protocols. Two trends led to the broader definition: medicine's ability to keep people on machines, even if they'd never regain mental function; and a growing demand for transplant organs from head trauma patients, whose beating hearts kept their organs healthy.
"Brain death is death," Caplan said. "It sounds like it's not really death, but it is. ... The term creates false hope and expectations," he said. "It would be far better to say: "The patient has died, and the reason is brain death.' "
Forty-three states -- including California -- now recognize "brain death" through laws or court decisions. Brain death laws also have the backing of the American Medical Association and the American Bar Association.
People who are "brain-dead" offer no response to any stimulus: pinprick to the skin, light in the eyes. Their pupils are fixed and dilated, their eyes don't move when their head is turned, and they cannot breathe without a ventilator. A brain scan detects no sign of activity. (They are not patients like Terri Schiavo, whose brain damage was not complete before she was removed from life support in 2005.)
The shift has been profound, and disconcerting to some.
Some members of religious groups, such as Orthodox Jews and evangelical Christians, still equate death with the ceasing of the heartbeat.
And minority groups are more likely to oppose limits on care at the end of life, bioethicist Nancy Dubler wrote in her essay "Conflict and Consensus at the End of Life."
Because of the nation's history of providing unequal care, "it is neither paranoid nor ungrounded for families of color to question whether the care they are receiving is the best that medicine can offer," Dubler wrote.
Yet, while families have the right to insist on treatment of living patients, there is no legal or ethical duty for hospitals to to treat the dead, ethicists say.
"We don't revive people by judges," said Caplan.
Hiram's family relented after the boy spent 11 days on a ventilator, but Jointer insists it was against the family's will. Hiram and his family were moved to a large room at Children's Hospital that Taylor, the family's pastor, said had the feeling of a Death Row gas chamber.
After six hours of saying goodbye and a final relative arrived from Reno, the family watched as the boy was removed from the ventilator. It took an hour before his heart stopped, raising more doubt within the family that he was truly gone before.
"It makes you question everything," Jointer said. "It's heart wrenching for them to turn the machine off and watch him living." She urged Jahi's family to keep fighting. So did Taylor.
Tuesday's verdict, if it supports previous evaluations, will end a tragedy that is no longer just medical, but emotional and judicial.
"Brain death is death," Caplan said. "It sounds like it's not really death, but it is."
Contact Lisa M. Krieger at 650-492-4098.