Many readers will be familiar with the case of Jahi McMath. She was 13 years old in December, 2013 when admitted to a children’s hospital in Oakland, CA for tonsillectomy and other surgical interventions for obstructive sleep apnea. She recovered from anesthesia normally, but began to bleed profusely from her mouth and nose, eventually resulting in cardiac arrest and anoxic brain injury. Several physicians attested that she met criteria for brain death.
More medical details and the family’s perspective on the associated communication breakdown can be found in the recently-filed malpractice complaint. As both a father and a doctor, it’s nauseating to imagine the pain of sending a child for elective surgery only to have her bleed out and die before your eyes. My heart goes out to Jahi’s family and everyone involved in her care; I hope they can soon find a peaceful resolution and closure to this awful misfortune.
Jahi’s body had been ventilated for about a week when her family and the hospital became embroiled in a legal dispute over whether to discontinue such. Eventually, a death certificate was issued and the family was permitted to transport her mechanically ventilated body to a facility in New Jersey. In New Jersey, if a determination of death by neurological criteria would violate a deceased’s religious beliefs, then cardiopulmonary criteria must be applied instead.
Nine months later, the family’s attorney, Christopher Dolan, announced that Jahi is not dead.
The argument is laid out in declarations by Dr. Alan Shewmon, emeritus professor of pediatric neurology at UCLA, and Dr. Calixto Machado, senior professor and researcher at the Institute of Neurology and Neurosurgery in Havana, Cuba. Both have extensively published in this field.
- You Tube videos show limb movements that
are thoughtthey claim to be volitional. These can be accessed here and here.
- Dr. Machado’s analysis of heart rate variability shows intact modulation of heart rate in response to photic stimulation and her mother’s voice. This suggests preservation of brainstem autonomic function.
- Jahi has reportedly begun to menstruate, thereby demonstrating intact hypothalamic and pituitary functions.
- EEG reportedly shows low voltage activity at a mixture of frequencies, rather than the isoelectric tracing used for the earlier confirmation of brain death.
- MRI shows preserved structure in the cerebral hemispheres, deep nuclei, and cerebellum, rather than the complete liquefaction that would be expected after months of no blood flow. See exhibits B and C in the declaration of Jahi’s attorney, Christopher B. Dolan.
- MRA reportedly shows intracranial blood flow; see exhibit D in attorney Dolan’s declaration.
Obviously, this case has profound importance for the concept of brain death and the organ transplant practices that rely on it. However, my purpose in writing is not to adjudicate the case from afar. One cannot render a neurological diagnosis based on snippets of You Tube video. The neurological exam findings here are of extreme importance, and neither these videos nor the documents available online depict proper neurological examinations. Likewise, the MRI, MRA, and EEG information that’s publicly available is far from complete.
My purpose here is to discuss a very important philosophical controversy regarding the concept of brain death–a controversy alluded to in this key passage from Dr. Shewmon’s declaration (emphasis added):
The medical and nursing records document that some months after the formal diagnosis of brain death, Jahi underwent menarche; she recently had her second menstrual period approximately a month or so after the first. The female menstrual cycle involves hormonal interaction between the
hypothalamus (part of the brain), the pituitary gland, and the ovaries. Corpses do not menstruate. Neither do corpses undergo sexual maturation . . . Hypothalamic function is a brain function, and California’s statutory definition of death by neurological criteria requires irreversible absence of all brain functions, so even apart from her responsiveness, she would not fulfill the statutory definition of death on the basis of hypothalamic function.
I call out this particular argument because although it is couched in legal terms, it is also deeply philosophical, is not new (see here, here, and here for some of Dr. Shewmon’s prior writings on the subject), and the argument was addressed very carefully by the President’s Council on Bioethics in their 2008 white paper titled, “Controversies in the Determination of Death“. This report is an outstandingly lucid read and I can’t recommend it highly enough to neurology trainees–if we’re going to routinely perform “brain death evaluations”, then we should be familiar not only with the procedure for such, but also its conceptual underpinnings. (I added a link to it on the Clinical Neurology Resources / Neurocritical Care page above). I’m going to try to not mangle the arguments as I summarize the opposing points of view below. In a subsequent post, I’ll offer some of my own thoughts on the concept of brain death.
When the concept of a neurological standard for determining death was first formulated, much of the rationale centered on the belief that upon the total and irreversible cessation of brain function, the body dis-integrates. It becomes instead, as stated by Dr. James Bernat, et al. “. . . merely a group of artificially maintained subsystems since the organism as a whole has ceased to function”. Moreover, it was believed that cardiac arrest would invariably ensue within a few days. However, Dr. Shewmon published many examples of bodily functions that can continue, and in some cases for prolonged periods of time, in spite of “total brain failure” (The President’s Council’s preferred term–see chapter 2 for terminology). These include:
- Metabolic and physiologic homeostasis–hepatic, renal, cardiovascular, and endocrine functions
- Maintenance of body temperature
- Wound healing
- The febrile and other immune responses to infection
- Successful gestation of a fetus
- Proportional growth and sexual maturation
The President’s Council responded by pointing out that even after the cessation of cardiopulmonary function, there are some cellular processes that continue for a time in the dead body. In other words, even using the non-controversial cardiopulmonary standard for declaring death, we do declare death before the cessation of all physiological activity. What distinguishes a living person from a dead body is not the presence of ongoing physiological processes per se, but whether the person remains “whole”. What does it mean to be whole? From chapter 4 (emphasis added):
Determining whether an organism remains a whole depends on recognizing the persistence or cessation of the fundamental vital work of a living organism—the work of self-preservation, achieved through the organism’s need-driven commerce with the surrounding world. When there is good reason to believe that an injury has irreversibly destroyed an organism’s ability to perform its fundamental vital work, then the conclusion that the organism as a whole has died is warranted.
What is an organism’s “fundamental vital work”?
The work of the organism, expressed in its commerce with the surrounding world, depends on three fundamental capacities:
- Openness to the world, that is, receptivity to stimuli and signals from the surrounding environment.
- The ability to act upon the world to obtain selectively what it needs.
- The basic felt need that drives the organism to act as it must, to obtain what it needs and what its openness reveals to be available.
The Council goes on to describe how the act of breathing is the fundamental expression of the organism’s receptiveness to environmental stimuli and its ability to act on such. They emphasize the appetitive nature of breathing, claiming that spontaneous breathing (as opposed to mechanical ventilation) evidences the “felt need” in criterion 3 above. Their conclusion (emphasis added):
If there are no signs of consciousness and if spontaneous breathing is absent and if the best clinical judgment is that these neurophysiological facts cannot be reversed, [we would] conclude that a once-living patient has now died. Thus, on this account, total brain failure can continue to serve as a criterion for declaring death—not because it necessarily indicates complete loss of integrated somatic functioning, but because it is a sign that this organism can no longer engage in the essential work that defines living things.
So, the President’s Council actually accepted Dr. Shewmon’s criticism that what we call brain death does not always result in the loss of integrated somatic functioning, but upheld the concept on an entirely different basis–the lost capacity to engage in the “fundamental vital work” of a living organism. When you think about it, it’s a staggering task that the Council undertook–nothing less than to craft a conceptual definition of life itself. One might disagree with the Council’s conclusions (and indeed, there was at least one dissenting opinion on the panel). However, I think it important that when Dr. Shewmon cites Jahi’s menarche in his argument that she’s not dead, this evidence be considered in light of the robust philosophical debate that has already taken place over the general issue of somatic integrity. His argument is not so conclusive as the jarring statement “corpses do not menstruate” suggests.