Thirteen-year-old Jahi McMath died on December 12, 2013, at Children’s Hospital & Research Center Oakland in California. Months later, she was still on a ventilator at an undisclosed location. Her parents refused to accept her death. They insisted on praying for a miracle. What was done to her corpse was wrong, but a bigger issue is the threat her case poses to the legal status of brain death, the rational and moral use of health-care worker skills, and the burden it may create on expensive health-care resources.
Jahi suffered from sleep apnea, likely due to her obesity. Her parents had taken the girl to Children’s Hospital Oakland for surgery to remove her tonsils to help open her airway. Things went tragically wrong, although exactly why or how is not known since no autopsy was performed. Jahi suffered complications after surgery, including a heart attack and hemorrhaging in her brain. Experts in neurology at Children’s Hospital Oakland—and an outside neurological expert from Stanford who was asked to perform an independent assessment by a court—determined that brain death had occurred. They knew with certainty that Jahi met the criteria for brain death because they were well aware of the sequence of events that had led to her massive brain injury.
Medicine cannot do anything for patients diagnosed as brain dead. Unlike those in a coma or in a permanent vegetative state, such as Terri Schiavo, a Florida woman whose parents fought unsuccessfully with her husband about whether to keep her alive, or Ariel Sharon, the former Israeli prime minister who was kept alive in a vegetative state for eight years before he died, no one recovers from brain death. Take away the machines, and breathing stops. Keep the machines going for a person who is brain dead, and, while the heart may beat for a time, the body goes into slow, inevitable, physiological deterioration in which digestion fails, skin breaks down, hormone regulation fails, and the body loses control of temperature and blood pressure, as well as the ability to urinate and defecate.
To keep Jahi’s body on machines was ethically wrong because a definitive diagnosis of brain death is legally recognized as death. Maintaining a corpse by artificial means is only slowing the inevitable decay and putrefaction of bodily remains.
Despite the legal recognition of brain death as death in every state, two states allow religious beliefs to take precedence over medical expertise. In response to the objection of some Orthodox Jews to the use of neurological criteria in diagnosing death, a 1987 New York regulation requires hospitals to have procedures for the “reasonable accommodation” of patients’ religious or moral objections to the standards used to determine death. And in 1991, New Jersey enacted a statute that recognizes both “traditional cardio-respiratory criteria” and “modern neurological criteria” for death. This law prohibits a physician from declaring brain death and stopping care when the doctor “has reason to believe” that “a declaration would violate the personal religious beliefs of the individual,” according to the New Jersey Office of the Attorney General. None of these statutes says who is to pay the bill for continuing care post-death, but it is hugely unlikely that insurance companies or government programs would do so.
No one, least of all loving parents, easily accepts the death of a family member. If such decisions are left to family members, our intensive care units will fill with bodies on machines surrounded by those hoping, and sometimes praying, that maybe death has not occurred.
It is wrong for health-care providers to treat someone who is dead. It is wrong for lawyers to ask judges to overrule medical expertise when it is doctors—not jurists—who know when death occurs according to medical and legal consensus. It is bad public policy and likely unconstitutional to allow those who invoke religious reasons to override the law and medical consensus.
Accommodating a grieving family by continuing to care for a corpse can be the humane thing to do. It is easier to see the deceased in the intensive care unit (ICU) than the morgue. And sometimes it takes time for family and friends to gather when death occurs. But accommodation must be limited to hours or days and not be subject to third-party veto for religious reasons.
It is not cheap to occupy a bed in the ICU—it costs as much as $10,000 per day. Also, doctors and nurses don’t want to treat the dead because it’s futile and violates their ethical duty not to abuse dead bodies. The prospect that more beds might be occupied by the dead surrounded by families armed with court orders demanding “accommodation” and waiting for miracles would add stress to already overstressed hospitals.
Americans seem to view death as only one option. But the desire to respect the feelings of families ought not to lead us to blur the line between life and death. To do so leaves families in a hellish limbo of denial and uncertainty as to when autopsies or organ donation ought to begin. At the same time, it leaves society facing a huge potential bill for providing futile care for idiosyncratic religious reasons when there are so many other vital health-care needs going unmet.