by Rachel Aviv
The New Yorker, February 5, 2018
This fine essay lives at the interface of neurology, ethics and the law. The case in question is that of a 13 year-old African-American girl who bled out after a tonsillectomy on December 9, 2013. “When Jahi McMath was declared brain-dead by the hospital, her family disagreed. Her case challenges the very nature of existence.” This is a complex article, superbly reported, and tragic. It brings to mind the film “Habla con Ella” and the book Beyond the Thin Blue Air.
Here are some excerpts from the New Yorker article.
It is likely that Jahi was in a minimally conscious state, a condition in which patients are partly or intermittently aware of themselves and their environment. Her condition “creates a particular challenge to either disprove or verify, because the likelihood of Jahi being in a ‘responsive’ state during a random examination is small.”
African-Americans are twice as likely as whites to ask that their lives be prolonged as much as possible, even in cases of irreversible coma—a preference that likely stems from fears of neglect.
At St. Peter’s Hospital in New Jersey. The cost of Jahi’s care was roughly a hundred and fifty thousand dollars a week. According to New Jersey’s 1991 statute on death, insurance providers can’t deny coverage because of “personal religious beliefs regarding the application of neurological criteria for declaring death.” Only one other state has a similar law (New York).
A music therapist visited the intensive-care unit every few days. She stood next to Jahi’s bed and played lullabies and soothing melodies on a harp. Nailah observed that Jahi’s heart rate, which tended to be high, would lower when the harpist played. She wondered if her daughter found the songs calming.
Pediatric neurologist D. Alan Shewmon has taken a special interest in her case. When Shewmon was a college sophomore, at Harvard, he listened to Chopin’s Trois Nouvelles Études No. 2, in his dorm room, and the music lifted him into such a state of ecstasy that he had an epiphany: he no longer thought it possible that all conscious experience, particularly one’s perception of beauty, could be a “mere electrophysiological epiphenomenon,” he said. The music seemed to transcend “the spatial limitations of matter.” He went to medical school, in 1971, and then specialized in neurology, because he wanted to understand the relationship between the mind and the brain. In 1997, in a paper called “Recovery from ‘Brain Death’: A Neurologist’s Apologia,” 1 Shewmon disavowed his earlier views.
Robert Truog, the director of the Center of Bioethics at Harvard, said that once, when he gave an academic talk on brain death, he described it as a catastrophic brain injury, rather than death. A transplant physician stood up and told him, “You should be ashamed of yourself. What you are doing is immoral: to put doubts in the minds of people about a practice that is saving countless lives. I’ve thought long and hard about that. In order to support public trust in the scientific enterprise, I guess I feel that the medical profession is always going to be better off, in the long run, if we speak honestly and truthfully about what we know.”
Recent advances in neuroimaging have led some clinicians to consider the possibility that a significant portion of patients thought to be in a vegetative state—those who demonstrate no overt awareness of their environment and do not make purposeful movements—have been misdiagnosed; they may be periodically conscious and capable of some degree of communication.
Recovery from "brain death": a neurologist's apologia.
Linacre Q. 1997 Feb;64(1):30-96. Full Text.