End-of-Life Medical Treatment

January 31st, 2014

What Happened to Jahi McMath?

On December 9, 13-year-old Jahi McMath underwent three surgeries at Children’s Hospital & Research Center in Oakland, California, to treat her sleep apnea. She had her tonsils, adenoids, and extra sinus tissue removed. While she was recovering in intensive care, complications led to massive blood loss and cardiac arrest, and Jahi was placed on a ventilator. On December 11, the hospital determined she was legally dead. Three EEGs and two evaluations by neurologists found no signs of cerebral activity. The hospital filed court documents stating Jahi “is brain dead in accordance with all accepted medical standards” and there is “absolutely no medical possibility that [her] condition is reversible or that she will someday recover from death.”

Jahi’s family secured a temporary restraining order that she be left on life support until December 30 (ultimately extended to January 7). “The family’s goal,” explained their attorney, Christopher Dolan, “is to keep [Jahi] alive as long as possible because they’ve seen so many issues of spontaneous recovery.” According to hospital spokesman Sam Singer, however, “The medical situation . . . is that Jahi McMath died several weeks ago.”

Because Children’s Hospital would not continue treatment to a patient declared dead, the family sought another facility. On January 5, the hospital released to the county coroner what it called, in a press statement, “the body of Jahi McMath,” still connected to a ventilator. “The coroner,” the statement continued, “has released her body to the custody of her mother . . . as per court order, for a destination unknown.” That destination remains unknown as of this writing; however, Dolan says the new facility is “giving [Jahi] everything that a person who would have a chance to live would be getting. . . . They are going to care for her, respect her and love her. And they’re going to call her Jahi, not ‘the body.’ ”

What Is Brain Death?

Nailah Winkfield, Jahi’s mother, insisted, “Her heart is beating, her blood is flowing. She moves when I go near her and talk to her. That’s not a dead person.” Her anguished words reflect long-held, intuitive understandings of death. As a committee at Harvard Medical School explained in a landmark 1968 article, “From ancient times down to the recent past it was clear that, when the respiration and heart stopped, the brain would die in a few minutes. . . . This is no longer valid,” the committee acknowledged, “when modern resuscitative and supportive measures are used.” Machines can continue “life” by the traditional standards of “persistent respiration and continuing heart beat” even in cases without “the remotest possibility of an individual recovering consciousness following massive brain damage.” The Harvard committee thus described “irreversible coma”—a state referred to today as “brain death”—as another criterion for determining when death has occurred.

In the 1981 report Defining Death, responding to increased legal ambiguity around the determination of death, a presidential commission on bioethics proposed the Uniform Determination of Death Act (UDDA): “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards” (see the sidebar “Determining Brain Death”). Today, in all 50 states, someone who is declared brain dead, who cannot breathe on his or her own, is legally dead. As Defining Death explains, “This view gives the brain primacy not merely as the sponsor of consciousness (since even unconscious persons may be alive), but also as the complex organizer and regulator of bodily functions. . . . Only the brain can direct the entire organism.”

The UDDA does not replace traditional criteria for determining death; it presents another, a neurologic set of criteria. Nor is it license to declare patients dead casually. As the President’s Council on Bioethics stated in 2009, “a brain-based standard” of death should be used only “in rare cases in which mechanical ventilation is used to support the breathing of a severely brain-injured individual.”

Though widely accepted in medicine and law, the concept of brain death has caused controversy. Some experts object to the term. “Calling someone brain dead,” write biomedical ethicist David Magnus and medical ethics director Arthur Caplan, “makes it sound like they are almost dead, sort of dead, kind of dead but not really dead—which they are.” And some critics, such as neonatologist Dr. Paul Byrne, charge that brain death is a fiction designed to increase the number of organs available for transplant.

A 2007 article in the Journal of Medical Ethics documents that the concept of brain death developed independently from organ transplantation, “although it is impossible to deny that the final success of transplants was improved by the development and refinement of the concept.” And while public confusion about brain death persists, scientists do not share it. In 2010, the American Academy of Neurology found no peer-reviewed, published reports of adult patients recovering neurologic function after a clinical diagnosis of brain death.

Faith and the End of Life

Throughout December and into early January, Jahi’s family hoped for her recovery. Her uncle, Omari Sealey, said, “As long as she has a pulse, we want her on life support. . . . We want a chance for a Christmas miracle.” But many medical and ethical experts insisted the machines were not providing Jahi “life support” at all. Laurence McCullough, a professor at Baylor College of Medicine, emphasized that “brain death” simply describes how death has been determined. Arthur Caplan, director of NYU Langone Medical Center’s medical ethics division, says a ventilator can “give the appearance of life,” but Jahi’s new doctors are “trying to ventilate and otherwise treat a corpse. . . . She is going to start to decompose.”

One reason Jahi’s case has attracted intense attention and sparked passionate debate may be because it reveals the tension between our natural instinct to preserve life and our intellectual awareness that death is inevitable. A recent Pew Research poll exposes the same tension. It found that two thirds (66 percent) of Americans agreed that “there are at least some situations in which a patient should be allowed to die.” At the same time, a growing minority, nearly a third (31 percent), agreed that “medical professionals always should do everything possible to save a patient’s life.”

“No amount of prayer,” said Sam Singer, “no amount of hope, no amount of any type of medical procedure will bring [Jahi] back.” But as people of prayer, Christians cannot help but consider Jahi’s case in light of their faith. Some Christians have been praying fervently for the miracle Jahi’s uncle mentioned—that God will, as Jahi’s mother said, “spark her brain awake.” The Facebook page “Keep Jahi McMath on Life Support” (with over 18,000 “likes” as of January 12) is filled with prayers for Jahi’s recovery and encouraging anecdotes of people who, after supposed declarations of brain death, suddenly awakened. Other Christians view such prayers with concern. Beth Haile, a professor of moral theology at Carroll College in Helena, Montana, said, “Of course, God can work a miracle. But prudential medical decisions cannot be made based merely on the hope that God might choose to act miraculously.”

Christians believe life is God’s good gift to be nurtured and treasured. Scripture is filled with accounts of God’s supernatural intervention to preserve and even restore life. When a young person like Jahi faces death, we may especially feel anger and grief. We remember that death is God’s “last enemy” (1 Corinthians 15:26), and we may ask why does God not spare a life that has really only begun. We can’t answer that question definitively, but we do believe “whether we live or die, we belong to God” (Romans 14:8). We believe we can entrust our loved ones’ lives, and our own, into God’s loving hands, as Jesus did when he drew his last breath (Luke 23:46).

Our beliefs don’t relieve us of the responsibility to think about how to use medical technology at life’s end, nor do they necessarily lessen the sadness and pain we feel at tragic deaths. They can, however, be a context of hope in which to grapple with such difficult issues, and they can be a source of comfort to extend to all who suffer in “the valley of the shadow of death” (Psalm 23:4, KJV).

Be sure to check out FaithLink, a weekly downloadable discussion guide for classes and small groups. FaithLink motivates Christians to consider their personal views on important contemporary issues, and it also encourages them to act on their beliefs.

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