This afternoon the latest chapter in the demise and subsequent saga of 13-year-old Jahi McMath has been started when a judge granted an extension of life support through Jan. 7. Since her surgery and subsequent cardiac arrest on Dec. 9, this case has become the topic of conversation throughout the nation. The unusual situation has attracted the commentary of medical providers, lawyers, ethicists, public relations agents, and religious figures. It has sparked an intense, emotional debate across water coolers and dining room tables. It deserves our considerate reflection for what it can teach us about medical science, the end of life, and the responsibility of physicians.
There is a paucity of known facts in this situation. The family and their lawyer have released few specific details. Oakland Children's Hospital, bound by the privacy restrictions of the Health Insurance Portability and Accountability Act (HIPAA), has offered even less. Jahi underwent three surgical procedures for the treatment of her sleep apnea. This included a tonsillectomy, uvulopalatopharyngoplasty (UPPP), and removal of nasal turbinates. Though initially described as a "routine tonsillectomy," this degree of surgery in children is not routine. It is extensive. When performed on a child, the risk is high. Bleeding and death can occur, as it did in her situation.
In recovery from surgery, about 30 minutes after its conclusion, it seems that she began to bleed profusely before she went into cardiac arrest. What may have triggered this? It has not been publicly disclosed, and it may not be fully known until autopsy. It is possible that she may have choked on her own blood and that this may have led to asphyxiation, depriving her brain of oxygen. Another equally plausible explanation would be that she lost such a volume of blood that her blood pressure dipped and, in a state of decreased blood flow to the brain, it was irreparably injured. Either scenario may be associated with a heart attack, as has been described. Regardless, the insult was fatal.
After she was stabilized, it is inevitable that a neurologist was called in to evaluate her. This is a position in which I have found myself many times. After cardiac arrest, a cooling protocol is often initiated. This is meant to preserve brain function by decreasing the metabolic demands of the damaged tissues. Once rewarming occurs, typically after a few days, the neurologist is summoned to perform a formal examination. This is done off of all sedation. This is a critical assessment because it can determine to what degree brain damage has occurred.
Neurologists, more than any other doctor, are specialists that rely on an elaborate and sophisticated examination. It is a skill that is learned over 4 years of residency and even among intelligent, capable physicians, it can be challenging to master. There are seven parts, or categories, to the examination: mental status, cranial nerves, motor, reflexes, sensory, coordination, and gait. In the setting of a comatose patient, it is simplified to include the components that can be tested without cooperation on the part of the patient.
When I examine a comatose patient, as I would have done in the case of Jahi, I start by evaluating the mental state. This relies on assessing the degree of responsiveness to stimuli. The patient's name may be spoken loudly and any response is carefully observed. Someone who is simply asleep or lethargic may startle, open her eyes, or even respond by speaking. Someone who is in a coma, by definition, will never open her eyes. Commands are often given: asking to wiggle toes, give a thumbs up, or open the eyes. The key is that with each command a clear action follows. This must be consistent and reproducible. "Open your eyes." Eyes open. "Close your eyes." Eyes close.
If verbal stimulation is insufficient, physical stimulation may be applied. This might be done by pinching the nailbeds of the hands or feet. Again, any response is monitored for, and someone who is partially conscious may cringe or pull away from the stimulus. This part can be a little tricky because some movements are reflexive and not purposeful.
People with severe brain damage or even brain death may still have reflexive movements that are mediated not by the brain or brainstem, but by the spinal cord. One example is called the triple flexion response. In squeezing the big toe, for example, the foot at the ankle, leg at the knee, and leg at the hip may all draw up. This is a reflex, similar to testing the stretch reflex of the patellar tendon at the knee. It is an action of the muscle, peripheral nerves, and spinal cord, and doesn't involve the brain. To sort out purposeful movements, rather than reflexive ones, the painful stimulus is often applied to the top of the foot. If the person is conscious, they will move the foot away from the stimulus to escape the pain. The reflex will draw the foot towards it. These subtleties, and there are many, require the expertise of the neurologist to differentiate.
In performing a brain death examination, the functions of the cranial nerves are also carefully evaluated. These trace to the brainstem, which is required to breathe, wake, and to even have sleep. In particular, the loss of pupillary restriction to light, blinking with touching of the cornea, conjugate movement of the eyes with head movement (oculocephalic reflex), and the gag reflex would occur in brain death. Further testing of these functions might occur with caloric testing, in which water is squirted on the eardrums to test for a reflexive movement of the eyes (vestibulocochlear reflex). Finally, apnea testing in which the ventilator is stopped and the levels of carbon dioxide are allowed to increase while monitoring for effort to breathe is also typically performed during a brain death assessment. Someone who is brain dead will not breathe off the ventilator, ever. These tests may be repeated once, sometimes by a different examiner or often by the same person the next day, to ensure that the findings are the same. Brain death assessments in children are especially careful given the gravity of the situation.
There are other ancillary tests that may be done that are not routinely required for the declaration of brain death. Nevertheless, they may be used according to some hospital protocols. In large part, this determination is made by a physician (usually a neurologist) after a careful clinical examination. Supporting tests might include an electroencephalogram (EEG) that shows absence of electrical brain activity, blood flow studies that show no blood entering the skull, or even imaging tests like a CT scan or MRI.
Once brain death has been determined, in most states (including California) the person is legally dead. Brain dead is dead. This situation becomes more complicated when there are preserved functions of the cranial nerves or a diminished, but not absent, level of responsiveness. These individuals are not brain dead but often develop persistent vegetative state and may not fully recover. When the brain is damaged, but not dead, this may allow for sleep-wake patterns, roving eye movements, and varying degrees of interaction with the environment. For the brain damaged, the spectrum can range from minimal responsiveness to (rarely) normal outcomes. However, the zero point on this spectrum - brain death - is not something that can be recovered from and there is no chance of any return to consciousness.
Can the body function with a dead brain? Yes. Modern life support machines used in the intensive care setting can keep blood circulating, a heart pumping, and lungs inflating. When the brain is dead, when there is no chance of recovering the person who has been lost, it is not ethical to keep the body's tissues alive artificially. Once the machine is turned off, the body functions will also cease. Therefore, the machines are understood to be sustaining the function of tissues that cannot now, or will not ever, sustain themselves independently. Much like blowing air into an empty paper sack, when the effort to inflate the sack ceases, it stills.
Therefore, medical doctors are legally and ethically obligated to discontinue medically futile care when brain death has been determined. In most cases, the family will be informed of the situation, given a chance to gather and say goodbye, and the machines will be turned off. This is the standard of care. This is what happens in intensive care units throughout the world. For some reason, which is not fully apparent, this is not what happened to Jahi McMath in Oakland.
The window of opportunity was left open and ignorance flooded in. Belief that she could recover defied medical reason. Even despite multiple physicians attesting to her brain death, her family clings to the hope that she will come back to them. No one with brain death has ever done so. Lawyers took the place of doctors. Decision-making by those with the expertise, the experience, the understanding of medicine was undermined by legal wrangling. Religious figures, dubious ethicists, and a parade of attention-seekers marched into view.
The death of Jahi McMath is extraordinarily sad. Such a complication occurs rarely, thankfully, but when it does it shatters a family's world. It is not uncaring, unfeeling, or unbelieving for her medical providers to assert the fact that she died. When so determined, their role was to promptly turn off the unnecessary machines. A moment of loss has been prolonged into an enduring tragedy. It was the responsibility of her doctors to put an end to it. By deferring the termination of her life support, her death can be denied and the law can struggle with making decisions that should never have been offered to it. Her doctors failed her, in that moment of greatest need, and we fail her still the longer we perpetuate her inevitable end.