The difficulty in defining death

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The questions are often the same, asked in desperate hope that the diagnosis might change: Can't we wait a little longer? How do you know for sure?

When Dr. Stephen Beed, critical-care physician at the Queen Elizabeth II Health Sciences Centre in Halifax, has to break the news of a brain death, he understands why families – and even some medical professionals – have a hard time accepting it. Unlike the pale stillness with which death is so often portrayed, their loved ones are warm to the touch, their chests rise and fall, and the line on the EKG continues to bounce.

"It looks like they are in a really deep sleep," Beed says, even though an extensive series of tests have confirmed an absence of brain function and brain-stem reflexes. "It doesn't change the reality, but I understand why it's difficult."

Uneasiness and confusion about defining death – our fear that "the plug" will be pulled too early, our grief that we may not do right by our loved ones – has become a central point in two very different cases in the United States. In California, the family of 13-year-old Jahi McMath is keeping vigil over her body, now maintained on a ventilator despite doctors declaring her brain-dead after suffering complications following a relatively routine surgery. To further confound public perception, the family's lawyer told reporters last week that "her health was improving."

In Texas, meanwhile, another family has filed a lawsuit to force a hospital to do the opposite – to shut down the machines that are maintaining the body of Marlise Munoz. In November, the 33-year-old paramedic was found unconscious on her kitchen floor. At the time she was 14 weeks pregnant. Her husband, Erick, claims in legal documents that he has been told that she is brain-dead – and has seen this diagnosis in her charts, though the hospital has made no public statement. She had been clear she didn't want to be kept on life support, but doctors have refused to comply with this request; to do so would harm the fetus, whose condition, now at 21 weeks, remains uncertain.

The sorrow of the two families is palpable – we are drawn in by our own uneasy questions of how we might act in a similar situation. In the Munoz case, the ethics have been further complicated by abortion politics in the U.S.: Does the end-of-life directive of the mother take precedence over the potential life of her fetus?

Based on the reported facts, as Beed and other doctors point out, the medical conclusion is simple: Both Munoz and McMath are dead even though their hearts, with machine support, continue to beat. (And with careful treatment, drugs and ventilation, their hearts could go on beating for months.) "Once you get your head around that sort of language, it changes the perspective of the situation," says Dr. Udo Schuklenk, the Ontario Research Chair in Bioethics at Queen's University.

In effect, the ethical dilemma boils down to the disposition of two bodies, and, depending on where one stands on abortion, arguably, one unborn person. In Canada, where a fetus acquires legal status only when born, the decision would rest largely between doctors and family, and not the state. "If it is technologically possible," says Dr. Sam Shemie, a pediatric ICU doctor and transplant specialist at Montreal Children's Hospital, "then the question of 'should it be done' is a family decision."

In the United States, only New York and New Jersey require hospitals to consider a family's moral or religious views in determining how to proceed in cases of brain death. But many states, including Texas, have a law that asserts "life-sustaining treatment" cannot be removed from a pregnant patient.

The Munoz family is arguing the young mother is dead – and no longer a patient – and so the law does not apply. The hospital, by continuing with "life sustaining" treatment, is "mutilating, disturbing and damaging" her body, and refusing to release it for proper burial. Describing his daughter's situation to The New York Times, her father, Ernest Machado said, "All she is, is a host for a fetus."

The Munoz case is rare, as well, because in other similar cases, families have asked to do whatever it takes to save the fetus. German researchers found that in 30 cases of brain-dead pregnant women from 1982 to 2010, 12 of the babies were delivered by cesarean section. (One died of an infection 30 days later, six were developing normally, and five cases had unknown outcomes.) Last year, in Hungary, a baby was born at 27 weeks after its mother was declared brain-dead at 15 weeks. But to accomplish this requires extreme measures to keep the mother's body functioning for the sake of the fetus – the very treatment that Marlise Munoz, her husband says, repeatedly stated she would not want.

The Texas case gets thornier still: Since the mother can no longer make the decisions about pregnancy – including whether to terminate if the fetus is found to be damaged – shouldn't that responsibility now fall to the only living parent, the father? His wife's parents are on record supporting the lawsuit – how much more complicated would the case be if they didn't? What of the fetus itself? If it were 30 weeks along, would that change the circumstances?

"In ethics, this is what's called a world of competing sorrows – whichever way you go there is a downside," says Margaret Somerville, founding director of the Centre for Medicine, Ethics and Law at McGill University. Perhaps the question, she says, is, "What are the competing claims here, and what does the least harm?"

Again, she says, language "is very important in how we see the ethics." For instance, "If you think an unborn child has some claims to protection of its life, which I certainly do, then you would say you are doing very little harm to the woman, by giving the baby a chance." Those who view the mother being used "as a container," as violating her dignity and wishes, may argue the opposite.

The medical terms further confuse the issue, which is why a growing number of doctors say they need to change. The phrase "life support" – which suggests that even though the brain is no longer working, "life" is being "supported" – is especially frustrating to Shemie. Even the term "brain death" implies a qualification – as if the process of dying is not yet complete.

For Beed, both the McMath and the Munoz cases are clear cut. As a doctor, he would not continue treating a dead body – as a California hospital continues to do with the 13-year-old. And in the case of a pregnant woman, he says, a properly informed family would be his guide. "If, at the end of the day, they say, 'Our decision is this,' than I would respect that."