It used to be pretty obvious.
But the swirling controversy around 13-year-old Jahi McMath, including a video of her parents explaining why they refuse to accept that she is dead, demonstrates vividly and painfully that it no longer is.
Her parents are not the first to question today’s medical and legal definitions of when someone is “dead.” Multiple times a year in my own hospital, Beth Israel Deaconess Medical Center, family members have great difficulty understanding and accepting that a loved one, whose heart continues to beat while connected to life support machines, is legally dead. In one very difficult and highly-publicized case a Buddhist family refused on religious grounds to accept our determination that, even though his heart continued to beat, their father, the patriarch of the family, was legally dead.
For Jahi's doctors, it was simple, obvious, and indisputable.
On Dec. 9, Jahi suffered a major hemorrhage after throat surgery, and despite full life support, including a mechanical ventilator, she lapsed into a deep coma. On Dec. 12, doctors confirmed that she had irreversible loss of all brain function (a result of her brain being deprived of oxygen for too long), and in accordance with legal standards for defining and determining death, declared her dead and issued a death certificate.
For her parents, it was also simple, obvious, and indisputable.
As her mother said, “Her heart is still beating, so there is still life there.”
As is typical in brain death, because of the life support machines, including the mechanical ventilator that was breathing for her, the rest of Jahi's body, including her heart, had continued to receive oxygen, and so had continued to function. But she — like our Buddhist patient — was now legally dead in accordance with standard brain death criteria that are accepted in all 50 states.
Normally, once such a determination is made, all machines are then stopped. With Jahi's brain not functioning at all, she would not take any breaths on her own, oxygen to her heart would plummet, her heart would stop beating, and her body would be transferred to a funeral home.
Jahi's parents, however, refused to accept that course, and promptly went to court, where it was ordered that the mechanical ventilator be continued until the case could be reviewed in more detail.
Until very recently, people everywhere could agree about the difference between a living human being and a dead body, or corpse. We used to refer to someone who is alive as “living and breathing,” even though those two words were redundant. When someone stopped breathing for more than a few moments, they were dead. When breathing stopped, the body had no oxygen, so the heart, the brain, and everything else were either simultaneously, or very soon, dead.
That order of things began to change on May 28, 1908, when doctors showed that a mechanical ventilator could revive a dog that had been smothered and had stopped breathing — dead, by conventional standards. The New York Times reported the next day that people cheered as the previously dead dog wagged its tail. An animal that had stopped breathing had effectively been brought back to life.
As use of mechanical ventilators became available in the medical care of humans, independent breathing was no longer required for someone to be alive. With the development of CPR in the 1950s, even someone’s heart stopping no longer meant death, because sometimes the heart could be restarted, and the person revived. Suddenly, a person whose breathing and heart had stopped was not necessarily “dead.”
Construction of intensive care units in hospitals rapidly followed — they now constitute nearly 20 percent of all hospital beds in the United States. Many of the patients in these units are kept alive with mechanical ventilators supporting their breathing, and with advanced cardiac medications and support systems keeping their hearts beating.
But in the 1960s, doctors noted that some of these patients had no signs of brain activity, often as the result of prolonged lack of oxygen during a cardiopulmonary arrest.
Questioning whether these patients should be considered “alive” led a Harvard committee in 1968 to propose redefining death. Patients with brain death — defined as “irreversible cessation of all functions of the entire brain” — but whose breathing continues because of mechanical ventilation and whose hearts continue to beat, would be considered legally dead.
In 1980, The Uniform Determination of Death Act, subsequently adopted in all 50 states, set revised medical and legal criteria for determining when someone is legally alive or dead.
By today’s law, once doctors had determined that Jahi had suffered brain death, she was legally dead.
But to her mother, who could see that her daughter’s heart was still beating and that her lungs were moving up and down (thanks to the ventilator), and who could touch her daughter’s face, arms, and legs and feel that they were still warm (in my experience watching family members, this is particularly powerful) — Jahi was still alive.
As a matter of basic biological fact, her mother was correct to say “there is still life there.” Not in her brain, but in most if not all of the rest of her young body. As with other brain dead patients, as long as her heart is circulating oxygenated blood to her tissues, all of Jahi’s other vital organs (including her heart, her lungs, her liver, and her kidneys) are likely not only alive, but possibly in such good condition that they are ideal organs to use in transplantation for the benefit of others. Without the availability of these organs from brain dead patients, most of the thousands of heart, lung, and liver transplants done each year would not be possible.
One professor of bioethics commented bluntly about Jahi’s family’s views: “There is a word for this: crazy.”
I’m not sure what he meant by “crazy.” It is common for family to find it deeply meaningful to spend time with a loved one who is in a profound coma, with no consciousness, and even with zero possibility of regaining consciousness. When I see this in our ICUs, I don’t usually see craziness, I see love.
The one thing I am most sure about in this case is that it is far from as simple as many doctors, lawyers, and bioethicists seem to think. I hope Jahi’s family is being helped to come to terms with the painful reality that she will never wake up.
As Jahi’s case fades from the news, a similar case has recently created headlines from Texas.
On Nov. 26, Erick Munoz found his wife, Marlise, unconscious on their kitchen floor. She was 33, and 14 weeks pregnant with their second child.
A trained paramedic, Munoz immediately started CPR. Hope must have fought against terror as his wife’s heart resumed beating. She was rushed to Fort Worth’s John Peter Smith Hospital, and placed on life support, including a mechanical ventilator.
But two days later, her doctors determined that she met the clinical criteria for brain death. But they did not simply declare her “dead.”
That decision led to a nightmare for Munoz.
The Texas Advance Directives Act, in most ways designed so that Texans can ensure that their wishes about end-of-life care are respected, contains an exception for pregnant women.
Invoking the law — which states that life-sustaining treatment cannot be withdrawn from pregnant women — the hospital refused to stop Marlise’s respirator, ignoring the pleas to stop from her husband and her parents. Her family said Marlise, who had also been a paramedic, had made it clear to them that she would never want to be kept alive this way. And because her entire brain was now dead from the prolonged lack of oxygen during her cardiac arrest, then surely the developing fetus was severely and irreparably damaged as well.
Unlike Jahi’s mother, who seeing her daughter’s heart continuing to beat could not believe or accept the doctors’ insistence that she was “dead,” Erick Munoz understood exactly what “brain dead” means. As days turned into weeks, seeing his wife’s body still attached to machines became more and more horrifying.
After nearly two months, Munoz sued the hospital in court for “cruel and obscene mutilation” of a dead body.
His wife, Munoz insisted in a sworn affidavit, died in November 2013. “I just want to put my wife’s deceased body to rest, and provide peace for our family.”
In late January, a judge ordered the hospital and its doctors “to pronounce Mrs. Munoz dead and remove the ventilator and all other ‘life-sustaining’ treatment from the body of Marlise Munoz.” Two days later, they complied.
Hospitals, and their doctors, are supposed to be there to care for us, especially when our worst nightmares have come true. They are not supposed to be in the business of causing additional nightmares.
Erick Munoz’s first nightmare was a tragedy. His and his family’s second nightmare was unconscionable. All that needed to happen was for Marlise’s doctors to do their job — having determined that she met the clinical criteria for brain death, all they needed to do was pronounce her dead. The Texas Advance Directives Act, as the court confirmed two months later, applies only to living pregnant women, and should have been both medically and legally irrelevant.
But apparently even Marlise’s doctors didn’t completely believe that “meeting clinical criteria for brain death” is quite the same as being dead.
Until we as a society reach a more solid consensus about when someone is alive or dead, and until doctors and hospitals become more reliably skilled in caring compassionately for family members whenever someone has died, variants of the nightmares of the McMath and Munoz families will recur for others.
In most cases, a workable path forward can be found, if doctors, nurses, and other staff combine clarity about their judgments with compassionate flexibility that helps families understand and accept today’s medical and legal definitions of death.
Sometimes that means continuing the ventilator for an additional day or two, giving a close family member time to come from out of town to say goodbye before life support is stopped.
In caring for our legally dead Buddhist patient and his family, rather than stop the ventilator as we normally do, at the family’s request we agreed to continue it and instead allowed intravenous cardiac medications that were sustaining his blood pressure to run out overnight. When those medications were gone the next morning, his blood pressure inevitably and steadily declined, and his heart stopped a few hours later.
Two days after he “met clinical criteria for brain death,” everyone agreed he was now “dead.”
Dr. Lachlan Forrow is director of ethics programs and director of palliative care programs at Beth Israel Deaconess Medical Center and an associate professor of medicine at Harvard Medical School. Read his blog at Boston.com/mortalmatters.