Editor’s Note: This column may be emotionally difficult to read, especially for those who have recently lost loved ones.

Unless you have been off the media grid, you cannot have missed the recent national headline stories about the California teenager and a pregnant woman in Texas who were declared brain-dead and yet put on ventilators. Why? Well, that’s the question. Reverse their vegetative state? Bring them back to even a partially normal life? Keep their bodies from deteriorating?

Ben Bycel

For years, there has been a broad consensus among medical professionals, including medical ethicists, on the definition of brain-dead. In all 50 states, either through legislation or judicial decree, “brain death” has been defined as “irreversible cessation of all brain functions of the entire brain, including the brain stem.” In this condition a person cannot breathe on her own and is declared legally dead. There are, of course, some medical professionals who disagree with this definition.

Jahi McMath, 13, was declared brain-dead after an operation. What went wrong with the medical procedure is not known at this time. The specific issues in the case of the pregnant Texas woman are different from the general debate about brain death, so that case will not be discussed here.

Jahi’s family challenged the doctors and administrators’ decision at Children’s Hospital in Oakland who declared Jahi brain-dead. The family and their lawyer maintained that medical treatment had to be given to Jahi, even after the doctors declared her legally dead. They demanded that she be kept on a respirator and provided assisted feeding.

The hospital responded that it violated medical ethics to provide medical treatment to a dead person for whom the coroner had issued a death certificate.

The family’s lawyer successfully won a legal victory — which is not necessarily an ethical one — when the judge decided to temporarily keep Jahi on a ventilator for weeks after she was declared brain-dead, and eventually the lawyer won permission for the family to transfer Jahi to an undisclosed care facility, even though the judge expressed doubt about any possibility of her recovery.

At the time of this writing no one outside the family knows of her condition. Experts who have been consulted on what condition Jahi might be in have said, according to the Los Angeles Times, “… it’s inevitable that her body will continue to deteriorate and that any mechanical assistance rendered will only ‘maintain an illusion of life where none exists.’”

“A brain-dead person is no longer alive. The term simply describes how the death was determined,” Laurence McCullough is quoted as saying in numerous publications. McCullough is a professor at the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston. He went on to say that there are no ethical issues about the care of someone who is brain-dead, because the patient is now a corpse.

McCullough’s concerns also included the emotional, spiritual, and financial damage the parents will suffer: “Insurance doesn’t pay for dead people.” Dr. Daniel Sulmasy, a Franciscan brother who specializes in medical ethics at the University of Chicago, is quoted in the National Catholic Register as stating that if the diagnosis of brain death is accurate, there should be no further attempts to provide treatment.

Does the family have an ethical right to hold onto their daughter (call it body, if you want), as one writer put it, “under an illusion of life”? Why shouldn’t they believe in miracles? Jahi’s family lawyer said that “families — not a doctor — should determine death and that anything less would be a violation of the family’s right to freedom of religion.”

I think, as do the overwhelming majority of experts in the field, that this line of thinking is nonsensical. As Karin Klein pointed out in the Los Angeles Times, Dolan’s argument might allow a family to decide a relative is dead before the doctors do. Moreover, as Klein points out, what “sort of long-term care would be devoted to cadavers under this kind of scenario?”

One ethical dilemma that arises out of these cases is clear — should we, as a society, allow people who can afford to pay for the prolonged private care of their brain-dead family members to do so? If their family ethical beliefs dictate that they attempt to keep their loved one “alive” even after a diagnosis of brain death, should these beliefs trump those of science and medicine?

What about less wealthy people, with or without such ethical beliefs, who do not have the financial means but want to keep a brain-dead person alive in the back bedroom or at some facility?

While it may not be unethical to do as Jahi’s parents have done, I think it sets dangerous and unrealistic expectations and adds unnecessary cost to our health-care system. It’s also simply bad public policy to encourage people to believe that being brain-dead is a recoverable state. As heartless as it sounds — dead is dead.

This does not mean that if I were ever faced with the same situation as Jahi’s parents, I would not at least consider the option they choose. I would hope that I would deal with my grief quite differently and know when to say my tearful good-byes.

This column just scratches the surface of what is likely to become a profound problem, and that is the clash between rapidly evolving science and technologies and our ability to sort through what are authentic scientific ideas and innovations and what is merely junk science. These are bound to create a multitude of ethical dilemmas. I’ll keep the conversation going in upcoming columns.

Editor’s Note: This column was revised on January 19, 2014, to reflect that Jahi’s operation was not a “routine” one.

Benjamin Bycel is an attorney and writer. He was the founding executive director of the Los Angeles Ethics Commission and of the newly reconstituted Connecticut Ethics office. He serves as an expert witness in cases dealing with political and legal ethics. If you have an ethics question, send it to streetethics@independent.com.


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