Twelve-year-old Motl Brody was diagnosed with a highly malignant brain tumor in February of 2008. In June of last year, his parents brought the boy from their home in Brooklyn, New York, to the Children’s National Medical Center in Washington, D.C. At Children’s, Motl underwent highly invasive, last-ditch brain surgery. It did not work. Motl Brody never regained consciousness.
Children’s National Medical Center is an acute-care hospital where the pressures on resources and personnel are intense. Motl’s doctors urged the Brodys to take the unconscious Motl home or move him to a facility where he could receive appropriate end-of-life care. Hospital staff members worked for months to try to find a suitable placement for Motl, but his parents would not agree to move him.
The Brodys are observant Orthodox Jews. They felt they had an obligation to protect Motl’s life both as parents and as Jews. Talk of nursing homes and hospice was unacceptable to them. And they did not want to risk killing him by trying to take him home.
On November 3, the doctors at Children’s pronounced Motl Brody brain-dead. They told the parents it was time to remove their son from life support. The Brodys said no. Their rabbi had told them that it was the cessation of breathing and cardiac function, not brain death, that constitutes death. And so the Brodys refused permission to stop life support.
The hospital decided to go to D.C. Superior Court, asking a judge to affirm that doctors were within their professional rights to declare Motl dead by brain-death criteria and that, therefore, continuing to care for his corpse in an intensive care unit was not required.
The family hired an attorney who argued that the Brodys were within their rights to have their religious views respected and to demand that Motl receive continued care. To do otherwise would violate the Religious Freedom Restoration Act (RFRA) of 1993. This law holds that “government should not substantially burden religious exercise without compelling justification.”
Just before the hearing, the hospital and the Brodys agreed to meet privately one more time to try and reach an agreement on Motl’s medical care. On November 13, the case became moot when Motl’s heart stopped beating. He was buried after a funeral in Brooklyn on November 17.
The public issues raised in the Motl Brody case are of enormous importance to every American. Who bears the cost of caring for patients such as Motl? Can individuals invoke their own definition of death if it is grounded in a religious or spiritual framework? Is brain death really death? And do doctors and hospitals need court orders to stop treating those they believe beyond a doubt to be dead?
It is not clear who was paying the cost of Motl Brody’s surgery and follow-up care at the National Children’s Medical Center. However, it is certain that no insurance company in the United States would honor a bill for continued treatment of someone who had been pronounced dead. Cases such as that of Motl Brody raise questions about the appropriateness of asking each of us to help share the cost—through charity or publicly funded programs such as Medicaid—of caring for the dead when that death is not accepted by the patient’s family. I doubt that such a case can be made.
Nor is the invocation of RFRA an especially compelling reason to continue caring for a dead boy. Whatever it means to say that government needs a “compelling justification” to go against the parents’ religious beliefs, surely the state has a compelling reason both to articulate a definition of death and to expect those with the appropriate expertise—doctors—to implement that definition for both medical and legal purposes. From a public-policy view, doctors—not rabbis, priests, shamans, imams, monks, priestesses, or tribal elders—are the experts at determining when death has occurred. The state is free to define death as it wishes. In the United States, both irreversible cardiac failure and loss of all brain activity have long been recognized as indicative of death. Doctors then follow standard protocols, procedures, and tests to make the determination that death has occurred. Religion has no role, and should have no role, to play in that process.
Is brain death really death? Brain death must not be confused with coma or permanent vegetative state (PVS). In the latter, there is still brain activity, even if there is no possibility of thought or sentience—as was true for Karen Ann Quinlan and Terry Schiavo. Brain death means no brain activity at all is present. There is nothing to signal the heart or lungs to continue working. So a brain-dead person can only have a heartbeat or lung activity if these are provided by external machines, power sources, and medicines.
Which leads to the last and most important question—if a patient is pronounced dead by cardiac or brain-death criteria, is there any obligation to honor family wishes to continue care? If there should be a dispute between family and doctors, does it merit resolution in court? The answers are “no” and “definitely not.”
When someone is pronounced dead in a hospital while on life support, there is no obligation to continue care. Sometimes, especially when the patient is a child such as Motl Brody, doctors allow the family to say good-bye while the machines are still running. Or they may wait until relatives arrive from great distances before pulling the plug simply as a gesture of kindness. But these acts are sometimes misinterpreted to mean that the person is not really dead or is not completely dead.
It is crucial that when death is pronounced, doctors and hospital administrators make it absolutely clear that life support will be stopped by a certain date and time, period. Not only is this the right thing to do in terms of allocating scarce resources and honoring the aims of medicine—which are to heal and cure, not artificially maintain organ function in a cadaver—it also minimizes the chance of doubt or confusion on the part of family members.
Still, some families are not going to accept death no matter what doctors say. Some, like the Brodys, will invoke their faith. Others may say they are awaiting a miracle. Still others may hope for a resurrection. None of these protests should lead doctors to a courtroom.
In the Motl Brody case, the hospital was ready to go to court both to confirm its right to determine death and its authority over the care of its patient. But it had no reason to do so, because hospitals already have this right and authority when it comes to death. It is those who either deny that death has come or insist on treatment in the face of death that bear the burden of going to court. Once there, they ought to lose their cases.
The determination of death in America is best left in the hands of doctors. The determination of when to end care that is completely and utterly futile because the patient has died is also best left to doctors. As much as death may trigger religious activity on the part of many, religion should never trump science when it comes to deciding when death has occurred in a hospital and what to do about that fact.