by Olga Rukovets
The concept of death by neurologic criteria — the irreversible loss of the clinical function of the whole brain, commonly known as brain death — is at the center of a very public ethical debate after two tragic stories-turned-legal-battles took the media by storm in January.
The first case involves 13-year-old Jahi McMath, who was declared brain dead after complications from a sleep apnea surgery, and whose family took Children’s Hospital Oakland in California to court for the right to move Jahi to a private facility that agreed to keep her on the ventilator despite the declaration. The second case of a 33-year-old paramedic, Marlise Muñoz, who was declared brain death while pregnant, had the family and hospital at odds for entirely different reasons — with the hospital refusing to follow the family’s wishes to take Marlise off the machines because of a misinterpreted Texas law.
The cases, albeit different, may reflect the gaps in public understanding of brain death and the continued uncertainty about the role that families of loved ones with disorders of consciousness should play in determining their fate and care, neurologists and neuroethicists interviewed for this article told Neurology Today.
Brain death can be a difficult concept for family members and the public to understand, but all 50 states recognize it as a form of death by either case or statutory law, said James Russell, DO, vice chair of the neurology department at Lahey Hospital and Medical Center and clinical professor of neurology at Tufts University School of Medicine. “It’s a generally well-accepted and documented concept, and no court has ever overturned a brain death diagnosis — although they have allowed religious exception in NY and NJ,” added Dr. Russell, who is also the vice chair of the Ethics, Law, and Humanities committee of the AAN.
“Whether the recent cases in the news reflect a broader public misunderstanding of the idea or a mistrust of the medical profession in general, I don’t know. But I worry about it,” Daniel Larriviere, MD, JD, acting chair of the Ochsner Neuroscience Institute in New Orleans, told Neurology Today.
Referring to the case involving the 13-year-old Jahi McMath, Dr. Larriviere, chair of the AAN Ethics, Law, and Humanities Committee, and member of the Neurology Today editorial advisory board, said he did not understand “the legal reasoning that would support a decision to let the family transport a dead body across the country for further ‘care,’” or issue a restraining order that kept the hospital from removing the girl’s ventilator.
Dr. Larriviere is concerned, as well, about the impact these case decisions could have on clinicians and other health care personnel who will be essentially [in the case of Jahi McMath] providing care for a dead body. Treating physicians may feel the effects “emotionally and psychologically, in their roles as healers as well as in terms of using scarce resources for a deceased person,” he said.
Stay tuned for the extended discussion from neuroethicists in the Mar. 20 issue of Neurology Today.
For now, see Neurology Today’s collection of stories on brain death determination: http://bit.ly/1lKUnh5, and watch the video interview between Neurology Today Editor-in-chief Steven P. Ringel, MD, and Associate Editor Robert Holloway, MD, on a potential new formula for assessing levels of consciousness: http://bit.ly/1fe8jga.