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The sad story of Jahi McMath, a 13-year-old girl in Oakland, Calif., who went into cardiac arrest after complications from a tonsillectomy last month and was declared brain dead on Dec. 12, has brought public attention to the difficult moral, legal and spiritual questions that all families face when a loved one is dying. A judge has ordered that after Jan. 7, Children's Hospital can take Jahi off life support.

 

To Nailah Winkfield, Jahi's mother, the insistence by doctors that her child has already died clashes with her belief that, in God's eyes, as long as her child's heart is beating, Jahi is still alive. As family members search for another facility to care for her, they have also pursued a legal battle to stop doctors from removing the ventilator that keeps her breathing. The family argues that the hospital's decision to declare Jahi dead is a violation of Ms. Winkfield's religious freedom.

 

Determining when a patient has died is just one of the controversies surrounding end-of-life medical care. Belgium is on the verge of enacting a law that will extend legalized euthanasia to minors, which would allow doctors to kill terminally ill and suffering children who, with their parents' approval, request death. Catholic groups there argue that better palliative care, not killing, is the best way to respect the dignity of terminally ill and suffering patients. In the U.S., Vermont legislators passed a bill in May allowing doctors to prescribe lethal doses of medication to terminally ill patients. A case challenging Minnesota's ban on assisted suicide has recently reached the state's supreme court.

 

The question in Jahi McMath's case is different, since the disagreement is not over ending the child's life or even whether to withdraw futile treatment--but whether she is alive at all.

 

In the case of Terri Schiavo -- the comatose woman who died in 2005 when her husband won a legal battle with her parents to remove life-support--no one disputed that Schiavo, in what doctors called a "vegetative state," was alive at the time. In this case, Jahi McMath's family believes she is alive. But doctors at the hospital have ruled that she is dead, because her entire brain, including the brain stem, has entirely failed.

 

Similar issues arose in the case of Motl Brody, a 12-year-old boy from an Orthodox Jewish family who in 2008 was declared brain dead after a struggle with cancer. Though there is disagreement in the Orthodox community over whether to accept brain death as the standard for determining when a person has died, the Brody family believed that Motl was still alive and that they had an obligation to do whatever they could to care for him until they were sure he had died. Arguing for religious freedom, the family challenged the hospital's decision to declare Motl dead and withdraw life support. He died when his heart stopped before a court could rule.

 

The legal question of whether parents can disagree with a medical declaration of death as a matter of religious liberty remains unsettled. New York is one of the few states whose laws on the determination of death allow for "reasonable accommodation" of the family's or the patient's religious beliefs.