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Dead Enough?: The Paradox of Brain Death

ISSUE:  Fall 2005

A perfect liver on ice has a nearly radiant sheen, a wet brown anterior so flawless that it reflects light. The broad, curved surfaces meet in sharp juxtaposition at the periphery, creating fine edges that would slice your fingertips if they were made of steel and not hepatocytes.

The surgeon lifts the organ out of the basin. It nestles into her cupped palms, the edges curling over her gloved fingers. She lowers it gently into the nook created by the flapping right diaphragm and the curved scaffolding of the rib cage. With bright blue sutures, she stitches the infrahepatic vena cava, the suprahepatic vena cava, and the portal vein, and then releases three vascular clamps in quick succession. Dammed blood bursts through the newly sewn connections and fills the liver like a balloon, changing its color to a deep plum. The organ hardens for a few minutes, shocked by the sudden ingress of warm blood; but once the oxygenated blood of the hepatic artery pulsates in, the liver begins to soften again.

A few minutes later, the surgeon raises the large, floppy front surface of the liver with the backside of her left hand. A tangle of vessels now rigid with blood emerges from a central port deep within the liver’s parenchyma. Just to the right, almost lost within the fat and folds of liver, is a tiny, pencil-thin duct. The surgeon, with her most delicate of forceps, grasps the edge of this duct and holds it up to view. The hollow is nearly invisible, but concentrating hard enough, you begin to see it. Pushing forth from the darkness and coalescing along the edge is the first sign of the liver’s function: a single, golden droplet of bile.

Livers like these are what drive the Lazarean awakenings of liver transplant patients. Their divine perfection reverses death-like comas, arrests the voluminous flows of mortal hemorrhage, and restores life force in patients who are all but dead. The more flawless these livers are, the more miraculously they work, their quality determined by, as much as anything else, the state of the donor. Small, seemingly insignificant differences in donors—a systolic blood pressure of 60 rather than 90, a cardiac arrest of 20 minutes instead of 10, a blood pH of 7.0 and not 7.4—determine which recipients will emerge from end-stage liver disease and which ones will die on the operating room table. Whether you are transplanting a liver or a heart or a kidney or a pancreas, the better the donor is, the better your patient’s outcome will be. And the very best of those donors is one who, when under the knife, is as close to alive as possible.

*  *  *  *  

I am a transplant and cancer surgeon and in my office, stashed among folders containing notes and old operative reports from my residency, two fellowships, and practice, is a 9 × 12 manila envelope that bulges with small white stickers. Each sticker bears the name and age of one of the 150 brain-dead patients whose organs I have procured.

People in my business refer to these donors as “cadaveric,” as much to emphasize their deceased status as to differentiate them from the living relatives and friends who give a kidney, a lung, or a part of a liver. Cadaveric donors make up the majority of organ donors in this country and are, as the adjective indicates, dead. Like their counterparts in hospital morgues, they possess all the official paperwork necessary to prove their status, including the appropriate certificates and scrawled physician notes that detail the time and date of death.

There is one notable difference between cadaveric donors and their mortuary peers, however: the brain-dead hardly seem dead. They are warm, with skin that seems capable of blushing. Their chests rise and fall so convincingly with each breath that the ventilator at the head of the bed seems like superfluous machinery rather than the source of the air that fills their lungs. If you look closely at the clear tubing that drains their bladders, you see droplets of warm condensation clinging to the inside walls from fresh streams of body-temperature urine.

After the first 20 times or so, harvesting organs becomes routine in the way that driving a car can be. Like a living patient, a brain-dead donor who has scarring from previous operations, extra layers of fat, or some anatomic variation of the norm can be difficult to work on. But the procedure is generally the same. The determination of brain death, usually made by the patient’s physicians, is a fait accompli by the time the procurement begins; and the donor will remain connected to a ventilator and life-supporting medications until you have opened the belly and chest and dissected out the organs and important blood vessels. When everyone in the room is ready, you shut a vascular clamp around the aorta and ask the anesthesiologists to disconnect the ventilator. You pack sterile, crushed ice quickly into body cavities to decrease any damage to the organs, and your assistant scissors across the vena cava, letting the blood run through suction tubing into wastebasket-sized, clear plastic canisters on the floor of the operating room. As the preservation fluid begins to fill the now emptying blood vessels and organs, you stand back for a few moments and watch the heart contract, writhe, and then fall absolutely still.

One winter about 15 years ago, long before I had any idea of what kind of doctor I would become, I came home from medical school wearing a fist-sized blue and white button on my coat lapel; it proclaimed that I was not taking my organs to heaven. When I walked through the door, my mother, who was sitting at her usual seat in the kitchen, looked me over for a moment and then frowned. I thought it was the coat, a used man’s black overcoat; instead, she pointed to the button. That weekend she badgered me incessantly; the button had obviously perturbed more than my mother’s sense of fashion propriety. “How can you be sure,” she asked me over and over, “that the doctors who want your organs will know you are dead enough?”

At the time, with only rudimentary medical education, I was not really able to answer her question, so I laughed instead and told her she was being irrational. To emphasize my point, I kept the button on my coat for several months, or at least until my next visit back home. But in truth, I had found my mother’s question unsettling.

When I am in social situations nowadays, I see people’s smiles freeze when they discover my profession. The lighthearted chatter stops, and their eyes become nystagmic, as if they are searching in the air around me for something to say. The seasoned socialites recover quickly and begin some polite discussion about a distant sick relative or friend or about a news story concerning organ transplants. Eventually, though, all of these conversations will arrive at the same point, as if the inner ruminations of every stranger I have met converge on a single thought. When they finally open their mouths to ask that familiar question, I feel for a moment that I am a medical student once again who is wearing the coat with the button and facing her mother in the kitchen. “What about you?” these strangers will say. “Have you signed your donor card?”

*  *  *  *  

On December 2, 1967, in Cape Town, South Africa, 25-year-old Denise Ann Darvall and her mother stopped by a bakery to pick up a birthday cake. As they made their way back across the street to their car, a truck hit them, killing the mother instantly. Denise, who had some residual signs of life, was rushed to Groote Schurr Hospital just up the road, where she was diagnosed with severe brain injury. Within a day of the accident, Dr. Christian Barnard, a young cardiothoracic surgeon who had set his sights on performing the first human-to-human heart transplant in the world, declared Darvall’s death, procured her heart with her father’s consent, and then stitched it into 55-year-old South African grocer Louis Washkansky.

Almost immediately, newspaper editorials began to question this surgical switching of parts, noting that a corpse had to be “cannibalized” for the living and that the donor’s heart continued to function although she was dead. One health official at the time said, “I have a horrible vision of ghouls hovering over an accident victim with long knives unsheathed, waiting to take out his organs as soon as he is pronounced dead.” The apparent success of this transplant had created a new moral dilemma: would doctors rush to declare one person dead in order to save another?

A year later, in an attempt to address the difficult implications of organ procurement, Dr. Robert Ebert, then dean at Harvard’s medical school, and Dr. Henry Beecher, a Harvard anesthesiologist well known for his critical work on the exploitation of human research subjects, formed an ad hoc committee to study the “hopelessly unconscious patient.” The committee published their report, “A Definition of Irreversible Coma,” in 1968 in the Journal of the American Medical Association.

At first glance, the report simply describes characteristics of what would soon be known as “brain death.” What is odd, however, given the controversy of the times and the sizable body of research that already existed on brain death, is that the report includes precious few references to either. Instead, the connection between brain function and death is described as if it were a well-accepted observation.

By turning the link between brain function and death into a given, the Harvard committee transformed a disputable academic and philosophical issue into an objective, incontrovertible, medical fact. Publication in one of the nation’s most prestigious, peer-reviewed, medical journals made defining death according to brain function morally acceptable; and the imprimatur of Harvard secured that transformation. The Harvard report remains one of the most frequently cited papers on brain death.

In the decade that followed publication of the report, there were fewer arguments over the ethics of defining death based on brain function and more about the criteria for determining brain death. The debate resulted in a dazzling array of options. One medical reviewer counted as many as 30 different recommendations by as many official medical societies. Some said brain death involved only the brain stem, which controls basic physical functions like breathing, swallowing, and sleep-wake cycles. Others cautioned that such a limitation could lead to defining as dead those patients who were “awake” inside but who had damaged brain stem function. They cited as an example patients with “locked in” syndrome, who are fully conscious and able to feel pain but can only blink. These groups believed instead that the brain stem and the cortex, the part of the brain that is responsible for abstract thought, memory, and self-awareness, had to be irreparably damaged for a patient to be diagnosed as brain-dead.

In 1981, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research proposed the concept of “whole brain death,” defining the moment of death as the point at which the brain had irreversibly lost total function. With this definition in hand, the commission drafted the Uniform Determination of Death Act, a piece of legislation that was immediately supported by both the American Medical Association and the American Bar Association and eventually adopted by most state legislatures.

In the nearly 25 years since the commission’s report, diagnosing brain death has become relatively straightforward based on three criteria. First, the patient must be in a severe coma not caused by a potentially reversible condition such as hypothermia. Second, brain stem reflexes, tested with various bedside exams, must be absent. Third, the patient, once disconnected from the ventilator, must make no spontaneous attempts to breathe and must have blood tests with corroborating elevations in carbon dioxide. While the real-life application of these criteria can be complicated by human variation, the results obtained are easily replicated when performed by experienced physicians. In the last two decades, then, it has become possible to diagnose brain death with unfailing accuracy.

*  *  *  *  

There is a belief in medicine that the pathologist has the final say and that in death there is truth. The truth in brain death is mind-boggling. While normal brain tissue is firm, a brain that has been dead shows progressive autolysis, a form of biological self-destruction. “It will almost be like soup,” Dr. Harry Vinters, chief of neuropathology at UCLA, recently explained to me. He is the co-author of a major textbook on the pathology of the brain and has performed almost a hundred autopsies on the brain-dead. “It really depends on how long they have been on the ventilator. If they have been on the ventilator for two days, then the brain is grey and softened. But if, for example, a family has had difficulty deciding what they want to do and the patient has been kept on the ventilator for two to three weeks, then there’s tremendous autolysis. The brain gets very swollen, soft, and mushy.” The nerve tissue can become so friable that fragments of brain from the head will break off and float down the spinal column. “Sometimes I’ll be looking at a slide of the spinal cord,” says Vinters, “and I’ll see fragments of cerebellum floating around in the specimen.”

I think about this finality of brain death when strangers ask me about my donor card. I also think about the transplant recipients that donor organs have saved. “Of course I have signed my card,” I will tell them. I have no qualms about giving my organs away.

The question that no one has ever asked me, however, is what I would do if I had to decide about donation for someone else in my family.

One of the most difficult things a doctor can do is to tell a family that the seemingly living body in front of them is actually dead. One trauma surgeon recently commented to me, “It’s always been hard for me to explain to a family that the brain-dead loved one is indeed dead, even though the EKG is beeping, the chest is going up and down, and the patient looks pink and asleep. The difficulty comes when the family asks for ‘one more day’ or to wait until an uncle arrives from out of town.” Families wonder if there has been a mistake, or if the patient is merely in some kind of temporary comatose state and, like a computer in standby mode, could come back to life any moment with a touch on the right button.

I have to admit that despite all I know about brain death, I still have my moments of uncertainty. More than once, when I have pulled my scalpel across the warm, pliable skin of a donor and seen the exuberant reds of well-oxygenated bleeding, my mother’s old nagging doubts have insinuated themselves into my forebrain. I have found myself thinking about the donors’ lives and asking the nurses who have met their families what they were like. As I push aside the still contracting intestines and inadvertently brush my hands against the remnants of the previous day’s meal within, I cannot help but think about that last meal and whether the donors and the people they were with had any inkling of the near future. And as I finally watch the last frenzied energy of their hearts dissipate into stillness, I am sorry that I am the one to witness the coming of that eternal silence and that those family members had to walk away from their loved one for the last time with the rhythmic bleats of the heart monitor still ringing in their ears.

More than once, as I have procured organs, I have had my doubts. But it was not that, like my mother, I was afraid that these donors were not dead enough; it was that I regretted having to keep them so alive.

*  *  *  *  

For almost 25 years now, our society has accepted brain death. But, as the passionate controversy around Terri Schiavo has shown, we are no more comfortable on a personal level with dying than we ever were.

Schiavo was not brain-dead; she was in a vegetative state. One part of her brain, the brain stem, was still intact and allowed her to breathe on her own, swallow, yawn, and have sleep-wake cycles. Nevertheless, after a year, the chance that patients with her diagnosis will “wake up” is exceedingly small.

Despite these overwhelming odds, Terri Schiavo’s parents and the supporters around them maintained that even the slimmest chance trumped any argument—medical, legal, or otherwise—to withdraw her feeding tube. They pulled out testimonies of other patients, although not necessarily with the same diagnosis, who had emerged from comatose states as evidence that she might do the same. Despite having watched their daughter spend years in a vegetative state, her parents chose to focus on the few seconds during which just the right contraction of a cheek muscle or shift of the gaze could be interpreted as a glimmer of consciousness.

The intensity of the parents’ hope, as irrational as it might have seemed, was awe-inspiring. And, even among the most medically reductionist among us, that kind of hope is not that far from what we might find ourselves feeling when faced with a loved one who is definitively brain-dead.

Death provokes profoundly painful and contradictory feelings, many of which can never be resolved. What is most difficult is not the similarity between the brain-dead and the living or even the implausible hope that the corpse of our loved one will revive. It is accepting the fact that someone we care for so deeply is gone. Acknowledging such finality would only bring up irresolvable feelings: how could this person be so alive in our minds yet definitively dead?

In brain death, the seemingly alive corpse embodies all of these inner contradictions but plays on the irrepressible human inclination to hope. While we may on one level acknowledge death, it is almost impossible to ignore what we want to see: the warm skin, the chest rising, the regular blinks from the cardiac monitors. The gap between what we know and what we want only widens. We may ask to keep the machines going a little bit longer, as if the body were still alive and not already dead. Sometimes, we may even hope against hope that the brain-dead will resolve our doubts by pulling out the tube and walking away or suddenly turning as cold and as lifeless as possible.

With death in all forms, we learn in the end to live with the contradiction of knowing someone is gone forever while remaining a very real part of our lives. But, unlike other kinds of death, brain death in someone we love demands that we accept this painful paradox immediately. For families who may still be reeling from the news that their loved one has been suddenly and critically injured, that can be an overwhelming task. It is, perhaps, nearly impossible.

*  *  *  *  

As I write, I hear my twin daughters laughing downstairs. They are almost three now; one looks like me and the other looks like their father. This morning they played in the park, wanted to sit on the coin-operated carousel outside the grocery store but began to cry when it started moving, smeared their faces with the juice of fresh strawberries that were as big as their fat fists, and threw their arms around my neck after they woke up from their nap as if the two hours away had been an eternity. As I hold them, their hair tickling my face, I smell the fading milky sweat of babies and the emerging earthy scent of toddlers. I remember how I began to cry and had to leave the room when I saw them vaccinated, the point of the needle plunging into their warm, soft flesh. The anguish of their cries crushed me; I could barely breathe.

I look at that manila envelope in my files, and I cannot imagine being able to do what those 150 families did. In the hours before I placed my knife on the bellies of these donors, their families faced a decision that demanded they accept a diagnosis that seemed entirely inconsistent with the warm, pulsating loved one on the hospital bed in front of them. It was a decision that would sit in the pit of their stomachs as they walked away from the hospital, as they wept at the funeral, and as they grieved, years later, over what had happened.

It is a decision I hope I will never have to make, but if I must, I pray that I will also have the courage to know when my loved one is dead enough.


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