The legal fight between a California hospital and the family of a teen who has been declared brain dead has reignited a debate about life, death and when medical technologies should be ended for a patient.
Like the case of Terri Schiavo, the nation has been captivated by the right-to-life battle of Jahi McMath, 13, who went to Children’s Hospital Oakland on Dec. 9 for tonsil surgery. After Jahi experienced major postoperative complications, she was declared brain dead. The hospital and her family have since been fighting over the next steps for her.
But the question in Jahi’s case is different from Schiavo’s, said E. Christian Brugger, senior fellow of ethics at the Culture of Life Foundation.
“With Terri, everyone on both sides of the issue knew she was alive and highly disabled,” he said. Her quality of life — as a woman in a persistent vegetative state on life-support technology — was the issue.
The question with Jahi is over life itself. “Is there no Jahi?” Mr. Brugger said. “That is going to be the substance of the debate.”
Other issues are how well modern America determines life and death — and how well news outlets convey nuanced medical and legal information.
The views of minority families about health care is also a factor: A poll has shown that minorities — especially blacks — strongly believe that no effort should be spared to keep someone alive.
In a court agreement Friday between the Oakland hospital and Jahi’s family, a judge agreed that Jahi could be moved out of the hospital, on a ventilator, with the understanding that Jahi’s mother, Latasha Nailah Winkfield, would be responsible for the child.
On Monday, the child was moved from the hospital to an undisclosed location, The Associated Press reported.
According to the agreement announced in Alameda County Superior Court, the Oakland hospital, which has maintained that Jahi died Dec. 12 because hospital and independent doctors found she had zero response in her brain and brainstem, would not be required to place feeding or other tubes in her.
Few details were made public after a separate meeting before a magistrate judge Friday, but Christopher Dolan, an attorney for the family, said the meeting was productive and established what the family needed to do.
“Today has been about clarity. It’s been about knowing exactly what path we have to walk down, what doors are now open, and what obstacles have been removed,” Mr. Dolan told reporters in California. “We know how to get from here to where we want to be, which is Jahi in another place where she is receiving care.”
A death certificate listing Jahi’s name and the date of Dec. 12 was prepared in the Alameda County coroner’s office, but it doesn’t list a cause of death, pending an autopsy, the San Jose Mercury News said Friday.
Dead or alive?
Jahi’s case has been compared to that of Schiavo, who was 26 in 1990 when she suffered a heart attack and brain damage, and went on life support. For years, Schiavo’s husband and parents battled over whether to disconnect her from her feeding tube. In the end, her husband prevailed in court and Schiavo died two weeks later, in March 2005.
The Schiavo case became a cause celebre of pro-life groups, who view all life as precious and stand against euthanasia as strongly as abortion. Jahi’s tragic outcome attracted similar attention: The Terri Schiavo Life & Hope Network stepped in to help Jahi’s family, and more than 1,200 people donated about $50,000 to the family through GoFundMe.com.
But in Jahi’s case, the sticking point was whether she was dead or alive.
In his court papers filed before Friday’s settlement, Mr. Dolan argued that Jahi had not been proved dead and unworthy of life support.
Dr. Paul Byrne, a prominent Catholic pediatrician, visited the child in the hospital and “observed her responding to her grandmother’s voice and touch with a squirming movement,” according to The Associated Press.
“In my opinion, this signifies she is not dead,” Dr. Byrne said. “She should receive treatment as she is alive just like everyone else with severe head injury. If she gets treatment, she will have a chance to recover brain function.”
Jahi’s family also said the eighth-grader was alive because Jahi moved when touched and was still “warm” to the touch. They begged the hospital to perform an operation to insert feeding and breathing tubes in Jahi, in preparation for her to be moved to another facility.
In the eyes of the hospital, though, Jahi met the well-known legal and clinical definition of death since no electrical activity could be found in her brain, even in the brainstem. It sought to disconnect Jahi from the ventilator and turn over her body to a coroner.
It also declined to place tubes into Jahi, saying it doesn’t ask its staff to perform such procedures on a patient who is brain dead. “Ms. McMath is dead,” one hospital official said.
These comments may have been particularly cruel to Jahi’s relatives, who have been praying for a miraculous recovery.
Hospital officials’ comments about Jahi being dead likely exacerbated “the distrust minorities have for institutions,” bioethics lawyer Wesley J. Smith said in a LifeNews.com article.
Mr. Smith noted that a 2013 Pew Research Center poll found that blacks and Hispanics were far more likely than whites to ask doctors to “do everything possible to save their lives” in cases where there was “no hope of improvement and [they] were suffering a great deal of pain.”
Even in these dire cases, only 40 percent of Hispanics and 33 percent of blacks said they would ask their doctors to “stop treatment so they could die,” the Pew poll found. In contrast, 65 percent of whites said they would accept cessation of treatment.
In addition, studies have indicated that minorities in America receive lower-quality health care and have found racial disparities in treatments and outcomes.
Because of that, people are going to be sensitized about racial issues and either “defend themselves” against a charge of discrimination or look at Jahi’s case “and factor in” the family’s race, Mr. Brugger said.
“The fact that this little girl is a black girl — I don’t know how it plays in but I do think it’s relevant,” he said.
Death by definition
Historically, death was declared when a person’s heart and lungs stopped working permanently. This changed with the development of life-support technologies. Once such organs could be kept active artificially, it became evident that a second definition of death was needed.
In 1968, a panel of professionals at Harvard Medical School concluded that if the “entire brain,” including the brainstem, had irreversibly ceased to function, that also meant a person has died. This definition of death was especially important to the field of organ donation, as it permitted the timely transfer of well-functioning organs.
The Harvard “total brain death” definition has been widely adopted in medical and legal circles.
In recent years, though, the Harvard view has been challenged, especially by neurologist Daniel Alan Shewmon, who showed that patients who had been declared brain dead but were placed on life-support machines were able to grow through puberty, fight off illness and even give birth, Mr. Brugger said.
Thus, while no one is arguing that corpses are being kept alive, he said, there is continuing disagreement over these end-of-life issues — especially “the adequacy” of the Harvard neurological definition for death.
In December 2008, the President’s Council on Bioethics reviewed these issues and upheld Harvard’s neurological standard as valid. But a few council members said sufficient uncertainty remained about the brain-death standard to “warrant an alternative approach to the care of the ‘brain dead’ human being and the question of organ procurement.”
The Terri Schiavo Life & Hope Network warned that Jahi’s case was “representative of a very deep problem within the U.S. healthcare system — particularly those issues surrounding the deaths of patients within the confines of hospital corporations, which have a vested financial interest in discontinuing life.”
“Families and individuals must make themselves aware of what so-called ‘brain death’ is and what it is not,” said Bobby Schindler, Schiavo’s brother and executive director of the organization.
“Every person needs to understand that medical accidents happen every day. Families and individuals must be more aware of the issue of accountability and patient rights.”