NEW YORK – In one way, the cases are polar opposites: The parents of Jahi McMath in Oakland, Calif., have fought to keep their daughter connected to a ventilator, while the parents and husband of Marlise Munoz in Fort Worth, Texas, want desperately to turn the machine off. In another way, the cases are identical: Both families have been shocked to learn that a loved one was declared brain-dead – and that hospital officials defied the family’s wishes for treatment.
Their wrenching stories raise questions about how brain death is determined, and who has the right to decide how such patients are treated.
“These cases are quite different from those we’ve known in the past,” like Karen Ann Quinlan, Nancy Cruzan or Terri Schiavo, said Dr. Joseph J. Fins, director of the medical ethics division at NewYork-Presbyterian/Weill Cornell Hospital. He explained: “Those patients could all breathe without a ventilator. They were in a vegetative state, not brain-dead, and that distinction makes all the difference.”
A person who has received a brain-death diagnosis cannot breathe on his or her own and is legally dead, in all 50 states. In two states, New York and New Jersey, hospitals must take into account the family’s religious or moral views in deciding how to proceed in such cases.
In all others, including California and Texas, hospitals are not required to consult the family in how to terminate care.
Doctors at Children’s Hospital in Oakland pronounced Jahi, 13, brain-dead on Dec. 9. She developed complications after surgery for sleep apnea and lost a large amount of blood. Munoz, 33, got the diagnosis at John Peter Smith Hospital in Fort Worth after she collapsed from a blood clot when she was 14 weeks pregnant. The hospital, citing a state law, refuses to remove the ventilator because it would harm the fetus, now in its 20th week.
The two cases are poignant in part because of a biological quirk of the body: The patients’ hearts continue to beat.
Hearts have their own biological pacemaker and can continue to function for days and even months after brain death, experts say, depending on the health of the patient and how much treatment is provided. The heart usually stops within a day or two, with ventilation and no other medical intervention.
That ventilation saved the fetus in the Munoz case, and probably in the nick of time, said Dr. R. Phillips Heine, director of maternal and fetal medicine at Duke University’s medical school. The diminished blood flow to the fetus when the mother collapsed – she is thought to have been passed out for about an hour before receiving care- “may lead to adverse effects over time, but we have no way to predict that,” Heine said.
A prolonged heartbeat has created the perception of life for Jahi’s family, while for Munoz’s relatives it represents a denial of the right to die.
To determine brain death, four elements are needed, experts said. First, the doctor must rule out other possible explanations for the unresponsive state, like anesthesia, diabetic coma or hypothermia. An injury must also be established, like a blow to the head or blood loss.
Doctors then test the function of cranial nerves, including one that runs to the eye and activates blinking; another in the throat that causes gagging; and a third in the inner ear that allows the eyes to focus on an object when the head is moving. Each of these engages the brain stem. If touching the person’s cornea with a Q-tip does not trigger a blink, or touching the back of the throat brings no gagging, the brain stem is either out of commission or close to it.
The last step is called an apnea test. To perform this, doctors slowly increase the amount of carbon dioxide the patient inhales through the ventilator, while keeping the oxygen supply steady. Once the carbon dioxide level reaches a certain threshold in the blood, anyone with a partly functional brain stem will wheeze for breath. This is the true litmus test for brain death, and it can take about 20 minutes, during which doctors must not leave the room even for a moment, said Dr. Panayiotis N. Varelas, director of the neuroscience intensive care unit at Henry Ford Hospital in Detroit.
“If the patient tries to breathe, you abort the test immediately and say the patient is not brain-dead,” Varelas said.
Under New York and New Jersey laws, people can prolong the provision of oxygen to keep a person’s heart beating for religious or moral reasons. But elsewhere, “life support” is superfluous, if there is no life to support. In that context, the McMath and Munoz cases are different, said Fins, who is working on a book titled “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness.”
The parents of Jahi McMath “are hoping their daughter will recover and asking to reverse a decision that isn’t under human control,” he said. “In the Munoz case, the family is asking to reverse a decision that is under human control, and has to do with whether the mother would want to be a mother under these circumstances.”