New York family fighting hospital over end to care for brain-dead boy

NEW YORK -- A Washington hospital has asked a judge for permission to stop treating a brain-dead 12-year-old cancer patient, even though his New York parents want to keep him on life support.

Motl Brody of Brooklyn was pronounced dead last week after a half-year fight against a brain tumor, and doctors at Children's National Medical Center in Washington say the seventh-grader's brain has ceased functioning entirely.

But for the past few days, a machine has continued to inflate and deflate his lungs. As of late Friday afternoon, his heart was still beating with the help of a cocktail of intravenous drugs and adrenaline.

That heartbeat has prompted Motl's parents, Eluzer and Miriam Brody, who are Orthodox Jews, to refuse the hospital's request to remove all artificial life support.

Under some interpretations of Jewish religious law, including the one accepted by the family's Hasidic sect, death occurs only when the heart and lungs stop functioning.

That means Motl "is alive, and his family has a religious obligation to secure all necessary and appropriate medical treatment to keep him alive," the family's attorney wrote in a court filing this week.

The family has asked the hospital to leave the breathing machine on and keep administering drugs until the boy's heart and lungs no longer respond.

Disagreements between families and medical providers over when to end care for terminally ill patients are common, experts say, but this case wound up in court with unusual speed.

Unlike Terri Schiavo or Karen Ann Quinlan, who became the subjects of right-to-die battles when they suffered brain damage and became unconscious, Motl's condition has deteriorated beyond a persistent vegetative state, his physicians say. His brain has died entirely, according to an affidavit filed by one of his doctors.

His eyes are fixed and dilated. His body neither moves nor responds to stimulation. His brain stem shows no electrical function, and his brain tissue has begun to decompose.

"This is death at its simplest," the hospital's attorneys wrote in a court filing.

The hospital said it would help the family move what it called the boy's "earthly remains" to another medical facility, but has found none willing to accept a brain-dead child.

The dispute wound up in court, when the family asked a federal judge to block the hospital from doing any further tests for brain activity.

The hospital responded by asking a District of Columbia Superior Court judge for permission to discontinue treatment.

Jeffrey I. Zuckerman, the attorney for Motl's parents, says they have been "utterly shattered" by the hospital's actions.

He stressed that the family's demand for continued life support was based on their obligations under religious law, not an unrealistic hope that their boy will recover.

"You can always hope for a miracle, but if you are asking if they are in denial about their child's medical condition, no, they are not," Zuckerman said.

A hearing was scheduled for Monday, but Children's National Medical Center said it would ask for a postponement until Wednesday.

"We respect the family's beliefs, and have tried since the patient's arrival in June to work closely with them in a spirit of mutual respect," the hospital said in a written statement.

It added, however, that attempts to discuss end-of-life issues with the family had been complicated.

Motl's mother and father haven't been to the hospital since July. The medical center says its requests to speak directly with them have been rebuffed, and in recent days, hospital employees "have been inundated with harassing and threatening calls" regarding the case.

A substantial delay in resolving the disagreement may render it moot. The hospital suggested in legal filings that the boy's remaining body functions will cease within weeks, if not days.

Dr. Edward Reichman, an associate professor of medicine at Albert Einstein Medical College in New York, said the question of how to accommodate religious beliefs regarding brain death comes up occasionally in New York, where there is a large population of Orthodox Jews.

While there is intense debate over whether to accept brain death as the spiritual end of life, hospitals usually find a way to work through it, he said.

"More often than not, the medical team ... will accept the wishes of the family, especially if cardiac death is anticipated in a short window of time," he said.

Arthur Caplan, a professor of bioethics at the University of Pennsylvania, said physicians aren't obligated to provide care that can't possibly be medically helpful.

"Doctors are well within their rights to say, 'We are stopping,"' he said. "I don't think medicine can become subservient to religious, spiritual or mystical hopes and beliefs concerning how to manage death."