Consider for a moment the end of your life.
Consider that I used to be like you, in that I rarely considered such things. I used to be insulated from the world of brain death and organ transplantation. About the only contact I’d had with these macabre ideas was when I checked the ‘organ donor’ box on my driver’s license application. Then, years ago, an avant garde psychology professor assigned me to write my own eulogy and living will. I remember thinking then that the idea of having my organs removed, even after death, was unsettling. Questions of whether I wanted to be resuscitated, kept alive by a ventilator, and other such end-of-life choices were no less alarming—but it was not until a recent chance encounter, an hour-long car ride with a pair of transplant surgeons, that I decided to undertake a serious investigation of these things, decided to reconsider them. Months of obsession left me scouring medical journals, committee reports, news stories, and bioethics texts late into the night. My curiosity had beckoned me to peek behind the final curtain, to see that death itself is more than a bit cryptic in this age of technological and medical wonders.
Consider, first, what it means to be ‘alive’: to be a metabolizing, replicating, adapting collection of cells. What it means to be ‘you’: to be a thinking, feeling, self-aware fragment of consciousness. Some combination of these attributes is what biologists, philosophers, neuroscientists, theologians, and lawyers identify as a human life. This notion of life, and ergo death, is rife with value judgments, assertions, and precious few facts. Further complicating the issue are the unfortunate states of being suspended between life and death—shaded in a multitude of grays, blurring, diffusing, and rendering impossible any clear threshold between the two.
You’ve likely made at least one decision, in at least partial ignorance, about how your final moments might look—a decision that might result in untold horrors, a decision that might shock you, a decision that deserves more attention than you’ve likely paid it. Perhaps you checked a box with a quick flick of your wrist, slicing open an entire hidden world of not-quite-dead cadavers and organ procurement organizations, shrouded in billions of reasons for opacity.
Consider what will unfold if you experience one of the of ‘deaths’ that meets the criteria for organ recovery (the previous nomenclature of ‘harvesting’ having fallen out of favor). You have suffered a stroke perhaps, or a catastrophic head injury in an automobile accident. You are comatose. The use of an electroencephalogram to measure brain activity is recommended, but not required, for diagnostic purposes. You do not receive an EEG. Your pupils have ceased to contract in response to light. Ice water dripped into your ears no longer elicits the reflex by which your brain stem and eyes seek to correct for vestibular disturbances. Your ventilator is disconnected to verify that you no longer spontaneously breathe on your own; reconnected, it perpetuates your existence in limbo. You pass (or fail?) these perfunctory tests on two separate occasions with different physicians. You slip into undeath. You meet the medicolegal definition of brain death and have become what is known as a beating heart cadaver (BHC): youand your brain are declared dead, but your organs are kept alive and oxygenated by mechanical ventilation and your still-beating heart.
Brain death is a fiction. It is an erroneous assertion borne out of the urgency to supply patients, in much better straits than the BHC in your imagined predicament, with viable organs that might extend their lives. This fiction was written swiftly in 1968, the year following the first successful transplant of a human heart—amid growing demand for organs—by the ‘Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.’ The Ad Hoc Committee report was an exercise in semantics designed to circumvent the dead-donor rule, a stringent ethical guideline that stipulates that the removal of organs must never be the cause of a donor’s death: they must already be dead. Within thirteen years, this idea of whole-brain death—as determined by reflex and apnea tests—became the law of the land across the United States and has persisted into present day.
Prior to diagnosing your brain death, the activity of many of the parts of your brain to which neuroscientists ascribe the activity of generating the consciousness that makes you youis not measured, cannot be measured. Consider that no tests or machines can conclusively determine that you no longer feel pain despite being brain dead, only that you no longer react to it.
Consider that prior to ending up as a BHC, you, like 52% of Americans, registered with the brief stroke of a pen to become an organ donor, compliments of your local Department of Motor Vehicles. You have given permission for a team of surgeons in service of an Organ Procurement Organization (OPO) to recover your heart, lungs, liver, pancreas, kidneys, and intestines. Your organs are worth more than $130,000 to the OPO.
Consider that the published literature on the subject shows a negative correlation between organ donation registration rates and years of experience within the medical field.
The OPO was contacted before your first brain death diagnostic exam, its wheels, part of a multi-billion dollar machine, spinning into action at the first hint from hospital staff of your loss of neurological reflexes—evidence that you might soon become a suitable organ donor. Thus begins the carefully orchestrated sales pitch, complete with communication protocols detailing the precise language and images to share with your family at each stage of the procurement process. Nationally, OPOs have a 42% donor conversion rate.
Consider what the moments following your diagnosis of brain death will look like for your family: before recovering your organs, the OPO must obtain permission from your next-of-kin, despite the fact that you’ve registered as a donor with the DMV. Even if you’ve explicitly declined to register as an organ donor, the OPO will still ask your family for permission to recover your organs; there is no database of non-donors. Regardless of whether they know your wishes, your relatives must partake in this decision. Imagine that they give consent, honoring the wishes of your hypothetical DMV donor registration.
Remember that no test has been done, nor can be done, to determine that your whole brain is permanently and irreversibly damaged beyond the point of making you you;but that you have been declared, nevertheless, to be permanently and irreversibly brain dead.
Consider the case of Jahi McMath, the thirteen-year-old Oakland girl who was declared brain dead due to hemorrhagic complications following a surgery to correct her sleep apnea. Her family believed her to still be alive, since her body was regulating its own temperature and repairing her surgical wounds, her heart was still beating, her organs were still functioning; in short, they adhered to a different definition of death than the whole-brain death espoused by the Ad Hoc Committee, a version of which is codified in California law. A legal battle ensued when the hospital tried to remove the ventilator that they felt was being wasted, at considerable expense, on what they viewed to be nothing more than a BHC; hospital administrators went as far as referring to the girl as a corpse. Amid the embarrassing scrutiny of national media attention, the hospital reached a settlement with the family, who relocated Jahi to New Jersey—where religious objections to the State’s medicolegal definition of brain death are allowed—and continued to care for her for more than four-and-a-half years. Dozens of videos showed evidence of her moving specific fingers or kicking her feet in response to verbal commands. In addition, she menstruated for the first time while brain dead—indicating that her hypothalamus and pituitary gland were functioning, and that not all of her brain had been permanently and irreversibly damaged. A neurologist filed a legal motion attesting as much, stating that she was a severely disabled girl, but a living one. The legal arguments have not yet been settled, but in this case, and in others like it, credible doctors have identified instances where permanent and irreversible brain death has been found to be neither permanent nor irreversible.
Consider that neuroplasticity allows the brain to redistribute to new areas tasks formerly performed by damaged or destroyed regions of the brain.
Consider Frankielen da Silva Zampoli Padilha, a pregnant woman who was declared brain dead after suffering a stroke. She gestated her unborn twins for the next one hundred twenty-three days before they were delivered, premature but healthy, via emergency cesarean upon her cardiac arrest.
Or Colleen Burns, an addict who was declared brain dead in a New York hospital following an overdose, who was on the operating table about to have her organs recovered for donation. She opened her eyes. She was discharged from the hospital two weeks later. Doctors make mistakes.
Consider that both auditory and visual cortices have shown EEG activity in brain dead patients. You might still hear what’s happening around you. You might still feel pain. No one can tell.
Consider how your final moments might unfold: several teams of surgeons and nurses surround you in a crowded operating room. One team will extract your liver, your pancreas, then your kidneys, your intestines. Perhaps your hands, or even your face, will be recovered as well. Then, within twenty-four hours, your corneas, skin, tendons, veins, and bones will all be recovered by a separate for-profit tissue procurement organization. But first, the cardiac team will recover your heart and lungs; they demand the most urgency; they have the shortest shelf-life.
Consider that you’re lying on the operating table: an impossibly keen scalpel is drawn—by a steady hand, with near-robotic precision—from the bottom of your larynx down to your pubic bone, silently unzipping the flesh of your chest, leaving a spreading crimson void in its wake. Do you feel pain? You have not been anesthetized, since doing so could have reduced the viability of your organs. Seconds later, you have a dim awareness of the high-pitched whir of a bone saw buzzing to life. Do you feel terror? Sturdy hands guide the oscillating jigsaw down the length of your sternum, an immense pressure tearing and vibrating through your chest until your breastbone splits apart with an audible crack. A sternal retractor ratchets open your rib-cage with a peeling, sucking sound—bathing your still-beating heart in artificial light, exposing it to the team of eager harvesters. Can you feel the cold air sinking inside of you? A clamp seals your aorta. Your heart has fed you for the last time. Razor-sharp scissors begin the dissection, severing left pulmonary veins, aorta, pulmonary arteries, pericardium, right pulmonary veins, vena cava. You are heartless. You are dead. By any definition.
Someday, your family might give consent, under duress from an organization with clear financial incentives—and perhaps guided by an ill-considered decision you made while applying for a driver’s license—for your still-beating heart to be cut out of your chest. No one will ever know for certain if you feel any pain or fear, as everyone involved is shielded from the unknown and unknowable realities of your final experience by the ad hoc fiction of brain death.
Consider again, for a moment, the end of your life.
Michael Bishop is an MFA candidate at the University of Idaho hailing from Oahu, Hawaii. Informed by studies in psychology and philosophy, and a career in environmental work and emergency rescue, his writing often explores the reciprocal determinism between nature and humanity. His work appears in The Normal School, Honolulu Civil Beat, and elsewhere. He is the recipient of a 2019 Writing in the Wild Fellowship from UI and is an avid explorer of both wilderness and consciousness alike.
Photo by danna § curious tangles on Foter.com / CC BY-NC-ND