The tragic case of a young teenager who has been declared brain-dead, after complications from surgery to have her tonsils removed, is pitching a devastated family against hospital administrators over when to withdraw life-support systems.
Jahi McMath of Oakland, Calif., has been connected to the machines since Dec. 12, after a seemingly routine tonsil operation three days earlier prompted what doctors say was massive bleeding and then cardiac arrest. Administrators at Children's Hospital Oakland said the 13-year-old is clinically dead and must be removed from ventilators, having reportedly been evaluated by two hospital staff and three independent physicians.
The girl's family is resisting that order – and on Friday a California judge issued a restraining order that stopped the hospital from taking action. On Monday, the court appointed Paul Graham Fisher, a pediatric neuro-oncologist at Stanford University's Lucile Packard Children's Hospital, to assess Jahi's condition, even as the family marshaled public support for a march and rally at the hospital.
The girl's mother and other family members, hoping for what they call a "Christmas miracle," are asking the hospital to keep Jahi on the machines through Christmas. The hospital, meanwhile, told the court in a document submitted Friday that “Ms. McMath is dead.”
Such heart-wrenching conflicts are not easy, says the Rev. John Paris, professor of bioethics at Boston College, in Chestnut Hill, Mass. But he says it would be medically inappropriate and ethically wrong to continue such measures in a circumstance like the one confronting Jahi's family.
"There’s no moral or legal or medical justification for providing ventilatory continuation in a corpse, other than organ transplant," Father Paris writes in an e-mail. "It’s not life support; the child is dead. They’re not keeping her alive; they are oxygenating her organs.”
The family’s position is understandable on an emotional level, he adds. “They cannot bring themselves to admit their daughter has died,” says Paris, who has consulted on the President's Commission for the Study of Ethics in Medicine and who frequently serves as an expert witness in cases involving termination of medical services. “But if you allow a system to say, ‘If the family screams loud enough, we will do what we believe is incorrect, we’ll do what we believe is not medically appropriate, we’ll do what we believe is wrong, we’ll continue to do what doesn’t work.' If you continue to go this route, it’s a colossal social disaster.”
Confusion over how to define death can complicate the picture for families facing such situations. Until 1968, when a Harvard University ad hoc committee recommended adding “brain-death” to cardiac death, the beating heart universally defined human life. Today, most US states accept the category of brain-death. Even as medical advances make it possible to sustain human bodies for use in organ transplants, those same advances may confuse family members who interpret warm skin and a pulse as signs that a loved one may recover.
It is not compassionate to give families false hope, Paris says. “What you really want to ask is not, ‘What should we do?' but [rather] 'What is going on? What’s happening? What is the reality?’ ” he says. The reality in Jahi's case, he says, is “we have a dead child in the hospital. And what’s the appropriate response to a corpse? An appropriate disposition of the body. It’s not putting it on a ventilator and saying, ‘Maybe this will get better?’ ”
This may sound cold, he acknowledges, “but I think it is compassionate. It forces you to ask what do you really mean by life, and what do we really mean by death, and what are our belief systems?”
Children's Hospital Oakland on Monday, in a statement expressing sympathy for Jahi's family, said it looked forward to Dr. Fisher's evaluation and noted that the hospital and the California Department of Public Health are investigating "what led to this catastrophic outcome."
Jahi's family members, who have told local media that they felt pressured by the hospital, point to unexplained recoveries that show there may be hope. Fisher is expected to give his report Tuesday to Alameda County Superior Court Judge Evelio Grillo, who will then decide how to proceed.