Family, ethics, medicine and law collide in Jahi McMath’s life _ or death

January 3

Is Jahi McMath, the 13-year-old whose entire brain has ceased to function, dead or alive?

Must doctors at a California hospital operate to prepare her for a move to a care facility in New York even though the hospital insists she is dead? No doctor can be compelled to treat the dead.

Or is she alive now and wanting to live on? Her mother, Nailah Winkfield, insists that removing the life-support machinery, which is performing all Jahi’s bodily functions, is the same as killing her daughter. Only a court order keeps Jahi still on life support, and that order expires on Tuesday (Jan. 7).

On Friday, a federal magistrate was expected to begin mediating the three-week-long dispute between Children’s Hospital & Research Center in Oakland and Jahi’s parents. But the battle goes beyond the courtroom, the hospital, and Jahi’s family because American society still struggles with defining death.

Jahi, a once-healthy girl who only went to the hospital for a simple tonsillectomy, cannot make a choice.

Thinking and speaking come from the cerebral cortex. According to doctors’ testimony, Jahi’s cerebral cortex stopped functioning after a cascade of post-surgical complications left her brain without oxygen. Her brain stem, which controls involuntary actions such as breathing, was also destroyed, the doctors testified.

In this critical way, Jahi’s medical situation differs from the headliner case of Terri Schiavo in March 2005.

Although the brother of Terri Schiavo has rallied to Jahi’s parents’ side, Schiavo was not brain-dead. She had some brain stem functioning. The life-support-or-death fight over Schiavo turned on the issue of her quality of life without consciousness.

Such distinctions are a 20th-century dilemma, said William Colby. He is the ethicist and attorney who successfully argued for the parents of Nancy Cruzan to be permitted in 1990 to remove life support for their permanently unconscious daughter. The case turned on testimony by someone who said Cruzan would not have wanted to endure on machines.

“It is so hard to communicate the legal definition of death because, for most of recorded time, we didn’t have one and we didn’t need one. Your heart, your brain and your lungs all stopped at the same time. Technology has changed that equation,” said Colby, who is now general counsel for Truman Medical Centers in Kansas City, Mo.

Colby acknowledged it is hard for a parent to look at a child who appears, even mechanically, to breath, and accept that the law and society view this as a dead body.

The 1980 Uniform Determination of Death Act defined death as “the “irreversible cessation of all functioning of the brain, including the brain stem.”

But technology can keep people apparently “alive,” leaving patients or their families with wrenching decisions. Two states, New Jersey and New York, allow religious exemptions for people who refuse to accept brain death criteria.

Research shows Americans have mixed views on when to let go of life. Two in three U.S. adults (66 percent) say there are circumstances when a patient should be allowed to die, according to a Pew Research study released in November.

However, the answers are flipped if the question is asked about babies: 57 percent say an infant should receive as much treatment as possible in the case of a life-threatening birth defect, even if parents want to refuse treatment.

Whether society considers adults, babies or teens, Colby sees overarching questions: “What is the purpose of medicine, when do we use it and when do we stop?”

John DiCamillo, staff ethicist at the National Catholic Bioethics Center in Philadelphia, says humans have “no way to know when there’s been metaphysical death — the separation of the soul. But we can trace the signs in the body.”

“If there is any lingering uncertainty, it must be medically resolved” beyond doubt, DiCamillo said.

“If there is any sign of brain stem function, even if someone is in a persistent vegetative state like Schiavo, that is sufficient to say this person is alive. And this person deserves the full dignity of the human person and must be sustained with proportionate medical treatment.”

That was the ethical argument behind Catholic support for Schiavo’s parents and brother when they fought her husband over maintaining the woman’s artificial feeding and hydration. Every court found for the husband, and Schiavo died in 2005.

In Jahi’s situation, DiCamillo said if rigorous testing showed there was no medical doubt that her entire brain no longer functioned, “there would be no Catholic ethical objection to ending mechanical support for her.”

Children’s Medical Center did not return a request for comment. Federal privacy laws do not allow the center to release specific information on Jahi’s medical situation. The hospital has issued press releases expressing sympathy, calling her deceased and linking to doctors’ statements to the court that repeatedly say her entire brain is irreversibly destroyed.

Not all ethicists agree, however, with the very idea of a uniform legal standard for death.

Dr. Griffin Trotter, professor of health care ethics and of surgery at St. Louis University, said: “The idea that there is a uniform conception is, to me, tyrannical. To enforce a conception of life and death is an overstepping by government.”

“Existentially, you could ask why would you want to continue treatment for someone whose brain is no more biologically functional than a fern. But ferns are alive and these people’s cells are alive, even if only by artificial means.”

Still, Trotter sees the moral distress of the hospital’s position. It is the antithesis of the medical mission to impose futile treatment, he said.

Meanwhile, Jahi’s family clings to hope for their daughter’s life. That hope can sustain them or it can prolong their agony, said Dr. James Salwitz, a New Jersey oncologist who teaches courses on death and dying at Rutgers University and writes a blog on end-of-life issues.

Over decades of bringing difficult news to patients whose lethal cancers cannot be halted, Salwitz said he’s seen false or misdirected hope exact a terrible price. It can transform into a powerful force — denial.

“Denial is an important survival mechanism we all use. But when denial becomes false hope, bad decisions get made and people suffer significantly more.”

But if people face difficulties clearly, Salwitz said, “they can be incredibly powerful, incredibly strong. If they have the tools to approach the challenges of death, they can share, they can teach, they can love.”

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