The Heart Healers (42 page)

Attached to the machine, Greta was transferred to the surgical recovery room. Tyler, deeply religious, later tearfully recalled for me how he spent the hours of the bleak night and early morning desperately praying, imploring, promising, begging God for Greta’s return.

The nursing staff kept the vigil overnight, but no heartbeat returned. In the morning, still with no heartbeat, medical science had run through all its options. What began as a chest thump had progressed through defibrillation, cardiac drugs, tracheal intubation, a stent, hypothermia, and the heart-lung machine. All had failed to restore life.

As science sank exhausted, faith emerged. In the morning Tyler knelt over Greta and begged her to open her eyes. Was that a flicker of movement? It was, so by some otherworldly definition perhaps she was alive. The heart-lung machine had staved off certain death in the limited sense that oxygenated blood was circulating through her body but her brain and heart were ensconced in a metaphorical netherworld, no longer loving yet still much loved.

At her bedside Jon faced a crushing new dilemma. Greta’s brain function was undetermined, but quite possibly irretrievably damaged or gone. Had Tyler received an otherworldly message to continue or had Greta entered the realm of futile therapy? On a Friday afternoon, Greta Adams, in the prime of her young life, had been visited by life’s most terrifying demon: sudden death. For health-care providers who witness it, it is never forgotten. For the parent, spouse, and children left behind, it is devastating beyond description. But when Saturday morning came, an evanescent response to Tyler’s plea could be taken as a sign that Greta might still arise from the ashes of the past eighteen hours.

A doctor’s responsibility is to extend life, but it is not to prolong dying. The eighteen-hour battle to maintain Greta’s life had sapped Jon’s options, his staff, even hope itself. The unpromising choices had become increasingly stark: procrastinate by moving Greta and her machines to the CCU for extended observation or admit defeat and turn them off. If Greta’s brain was still intact, but her heart was gone, Jon forlornly argued, perhaps she could have a heart transplant. With little hope but unwilling to give up in the first twenty-four hours of care, Jon sent Greta to the CCU, the modern home of resurrection.

Had Greta reached the Mother of All Uncertainties in which no one could even say if she was alive or dead? An elephant was now in Greta’s private CCU cubicle. When was it time to turn off life support? In the euphemism of medicine, should they “see how she does off the machine”? If not now, when?

For millennia, and indeed when I entered medicine, no one needed an expert to say when someone was dead—cessation of heartbeat and breathing meant death. But during my early years in cardiology, science trumped nature. When we became able to maintain these two functions artificially and indefinitely, death demanded redefinition. Death of the brain, as the third organ critical for sentient existence, became the obvious candidate. Assessment of brain death, simple in concept, has proven to be controversial beyond imagination. According to the American College of Neurology, the diagnosis of brain death is made twenty-five to thirty times a year in every major medical center. How do we do it, and wherein lies the rub? The diagnosis of brain death requires the presence of three cardinal criteria: absence of response to painful stimuli (like firm pressure on the nail beds), absence of reflexes (like pupils constricting in bright light) which are mediated by the lowest level of the brain, called the “brain stem,” and absence of spontaneous respiration. If a patient is on a respirator, it is turned off to allow observation for spontaneous respiration. All potential causes of temporary and reversible causes of brain suppression, like drug overdose, hypothermia, and confounding conditions such as severe electrolyte and endocrine disturbances must be excluded. When a question remains after clinical assessment, neurologists can use supplemental tests including the recording of brain waves, brain imaging by magnetic resonance imaging or X-ray, and measurement of blood flow into the brain.

The reason that the diagnosis of brain death can become explosively controversial is that a brain-dead person may have spontaneous movements of limbs, or open eyes, or what seems like a facial expression and yet be completely and permanently unaware of their environment. An inexperienced individual, typically a family member, can misunderstand such movement as purposeful, and infer the possibility of recovery. Medical centers try to prevent these tragedies through a small standing committee of specialists, which provides an independent review and opinion in such cases.

When disputes over a loved one’s state of consciousness burst outside medical control, the results are often tragic. On an early morning in February 1990 in St. Petersburg, Florida, Terri Schiavo, a pretty raven-haired thirty-six-year-old, concerned about her weight, but otherwise healthy, walked down the hallway of the apartment she shared with her husband, Michael. She had been faithfully pursuing a liquid diet, which included about ten to fifteen glasses of iced tea daily in an effort to reclaim the figure of her youth. Suddenly she collapsed to the floor, unresponsive. Michael’s frantic 911 call brought paramedics who encountered a woman lying prone in the hallway with no respiration and no pulse. They attempted resuscitation and rushed her to Humana Northside Hospital where she was intubated (a breathing tube was inserted into her windpipe). But it was far too late. Lack of oxygen during her cardiac arrest had led to massive brain damage. On hospital admission her serum potassium level was noted to be extremely low (2.0 mEq/L, about half the normal level), probably due to her excessive fluid intake. Very low serum potassium level is a cause of sudden death due to ventricular fibrillation. Terri’s sudden death was one of a brief rash of cardiac arrests in young women trying the fad liquid diet that quickly disappeared after its risks were recognized.

After ten weeks in a coma, Terri was given the diagnosis of persistent vegetative state. Her husband, Michael, however, refused to give up. He flew her to California for an implantation of an experimental electrical stimulator in her brain. The device induced no benefit. He arranged other therapies that he hoped might support her return to consciousness; these too failed. Terri’s always-supportive parents, Robert and Mary Schindler, put Michael up in their home for some months, and gallantly encouraged him to “get on with his life.” Michael even introduced some of his dates to Terri’s parents. But after seven years of completely unsuccessful therapies aimed at restoring her brain function, Michael finally conceded the irreversibility of Terri’s condition. When he discussed removing her feeding tube, however, the Schindlers vigorously opposed him, arguing that she responded to her environment. In such tense situations, hospitals are reluctant to act. Michael petitioned the Pinellas County Circuit Court to remove her feeding tube.

Since Terri had no living will, a trial was conducted to assess Terri’s own wishes concerning her life support. Neurologists, other physicians, and court-appointed experts testified that Terri had no brain function and that there was no possibility of improvement in her condition. The Schindlers countered that “Terri was a devout Roman Catholic who would not wish to violate the Church’s teachings on euthanasia by refusing nutrition and hydration.” Based on all the evidence, the court determined that Terri had made reliable oral declarations that she would not wish to continue life support and ordered Terri’s feeding tube to be disconnected. Two days after it was disconnected, however, her parents obtained an injunction from a second court, and the tube was reconnected.

Terri’s case wandered through a seven-year maze of hearings, petitions, and trials. Among the most compelling pieces of evidence on both sides were images. One court ordered six hours of videotape of Terri with her parents and neurologist. Both the neurologist and the judge after watching all six hours of tape concluded that it provided no evidence of interaction between Terri and her mother. The parents, however, made six still images from the video, which implied consciousness.

The MRI of Terri’s brain showed massive loss of tissue. An EEG showed no measurable brain activity. After an October 2003 hearing, her feeding tube was again removed. The parents turned to politicians. Within a week Florida State Representative Frank Attkisson convinced his legislature to pass “Terri’s Law,” which gave Governor Jeb Bush the authority to order the feeding tube reinserted. Bush ordered reinsertion of the tube. The liberal American Civil Liberties Union represented Terri’s husband, Michael, and the conservative American Center for Law and Justice spoke for Terri’s parents. Her case finally reached the Florida Supreme Court, which struck down Terri’s Law as unconstitutional. When the feeding tube was ordered removed again in 2005, Republicans in the Senate and House of Representatives passed bill S.686, which transferred jurisdiction of Terri’s case to the federal courts. President George W. Bush, on vacation in Texas, flew back to Washington to sign the bill.

Soon thereafter, “the Schiavo memo,” written by the legal counsel to Florida Republican senator Mel Martinez, created a political uproar. The memo suggested the Schiavo case offered “a great political issue” against Florida Democratic Senator William Nelson, who had refused to co-sponsor the bill. Although Terri’s dilemma had attracted powerful support from the religious right, the broader electorate was unconvinced, and Nelson easily won reelection in 2006. Ultimately, the U.S. Supreme Court declined to hear the case, ending the legal saga. Once again the feeding tube was disconnected, and thirteen days later Terri Schiavo’s fifteen-year ordeal ended as she finally passed away peacefully on March 31, 2005.

Terri Schiavo’s autopsy the following day revealed extensive brain damage. Her brain weighed only 615 grams, barely half that of the brain of a thirty-six-year-old woman of her height and weight. Disarray of the remaining brain cells was apparent under the microscope. There was no possible medical doubt that Terri had lost all cognitive brain function. The MRI, brain wave, and cerebral blood flow analysis years earlier, of course, had already established that there never had been a reasonable medical doubt. Viewing the autopsy evidence, the chief medical examiner stated that the damage was “irreversible, and no amount of therapy or treatment would have regenerated the massive loss of neurons [neurons are brain cells].”

The debate over Terri’s consciousness, fueled by well-meaning people not qualified to make such a judgment, was a fiasco that consumed hours of court time and millions of health-care dollars. The Florida courts had heard fourteen appeals. The federal courts had litigated five lawsuits. Both the Florida legislature and the U.S. Congress had passed laws about Terri, and had seen their laws struck down. The U.S. Supreme Court had to refuse to consider her case four different times. After all this expenditure of time and treasure, the outcome was the original thoughtful decision made by a deeply concerned husband with his physician consultants. Two polls conducted during the height of the controversy suggest that a large majority of Americans understood the central issue, feeling that the life support decision should rest with Terri’s husband, Michael, and that legislative intervention was inappropriate.

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GRETA’S CONDITION CARRIED
the possibility of evolving in a similar direction. She still responded to painful stimuli, and the pupils of her eyes still reacted to light, so clearly she was not brain-dead. Still, if Greta continued with neither heartbeat nor respiration, the cost of continuing on would be incalculable. Further, even if she recovered cardiac and respiratory function she could emerge, like Terri, in a permanent vegetative state. The best medical judgment, however, said continue on, for one compelling reason: the four-minute rule for brain death. Properly performed CPR provides enough blood flow to the brain to maintain its viability. Greta’s CPR had begun immediately after her loss of consciousness, whereas Terri’s interval was much longer. And now with the heart-lung machine, she had a reliable source pumping oxygenated blood throughout her body. Jon’s strategy and Tyler’s prayers rested on the uncertain hope that during the period from her cardiac arrest to turning on the heart-lung machine, Greta’s brain had remained intact.

Sometime during that day, no one knows precisely when, Greta’s heart contracted once. Then again. Every person in the room stood immobilized like statues, silently staring at the ECG monitor, astonished, transfixed, struggling to focus, denying, disbelieving, believing. There it was. Greta’s heart was beating, not powerfully, not regularly, not rapidly, but it was beating. As if awaking from a deep sleep, Greta’s heart rubbed its metaphorical eyes and began to wake up. The next day, a small cadre of doctors stood wordless at her bedside, watching the ECG monitor for a full minute. Finally one broke the awed, reverent silence of the congregation.

“Normal sinus rhythm,” he said. Greta, still unconscious, had a normal heartbeat and a normal blood pressure. Her heart was suggesting it was ready to return from purgatory. Over the ensuing hours, Greta’s heartbeat and blood pressure remained in the normal range, much as we see when a patient comes off the heart-lung after cardiac surgery. Tyler stood at her bedside, engulfed in the tears, hugs, and prayers of family members. Today he chokes up as he recalls those hours when Greta’s heart regained its footing while her brain remained silent. Uncertainty, fear, hope, helpless desperation … he could only wait and pray.

During the next few days, Greta’s brain function returned like a person recovering from a prolonged surgical procedure under anesthesia. As Greta recalls it today, she woke up and looked at her surroundings with a furrowed brow. “What happened? What’s going on?” she asked. When Tyler came into the room, she recognized him immediately. In about a week, Greta got out of her bed, and the next day she was able to walk to the bathroom. Greta Adams was back; Mommy would be coming home. But was her marathon now complete, or had she only passed through purgatory to return to her starting line, the catheterization laboratory?