Reaching Down the Rabbit Hole (27 page)

Shewmon’s point is a subtle one, and although it does not diverge
very far from true orthodoxy, from the orthodoxy Trey defended unflinchingly, it diverges enough to make many neurologists uncomfortable. If we accept Shewmon’s point with no qualification, it would mean that transplant surgeons are killing people, murdering them, and that we, the neurologists who sign off on it by declaring people brain dead, are accessories.

Shewmon himself is not making that argument, nor am I. Nor is Shewmon really my arch-nemesis. I once staked out an opposing view on this one point, but so did Shewmon himself. I was well aware that the moment we declared Mike Kavanagh brain dead, a transplant surgeon would walk through the door and cut a lymph node out of Mike’s neck without anesthesia. After some quick tests, Mike would be whisked off to a specialized operating room, his muscles would be paralyzed, and, again without anesthesia, his kidneys, liver, heart, corneas, skin, and bone marrow would be removed and carefully preserved. He would not spend very much time in that awkward state of being: a warm, pulsating body that is legally a corpse. The removal of vital organs would quickly render him dead by any standard, yet during that short interval between the ICU and the OR, Mike Kavanagh would exist in a kind of limbo: legally dead but not biologically dead. He would be a “neomort,” to use a term invented by the psychiatrist William Gaylin in 1974, three years before Robin Cook’s novel
Coma
became a movie, and turned brain death and neomorts into an unsettling film-noir scenario.

It can be humbling to cede a point to an opponent, unless you come to realize that he is not an opponent after all, rather that he is a scientist doing what scientists are supposed to do: question the status quo. Alan Shewmon claims, rightly, that there are three concepts of death: a biological one that speaks of the organism, a psychological one that speaks of the person, and a sociological one that speaks of the legal person. Currently, the tests for death by brain criteria and their rationale are entirely biological. But Shewmon argues that equating brain death with the death of the person crosses the line into
another domain. If we are going to pronounce someone dead because their brain has ceased functioning, we have to make that argument on psychological, sociological, or other grounds, and not on biological ones. His point about the biologist, while dramatic, is something of a canard. A good biologist would see through it as a trap. If you have a body that is a living organism, but is the equivalent of a worm, it is not necessarily a living human being.

Ten minutes were up, and the result was conclusive. Mike Kavanagh had failed the apnea test.

“That’s a wrap,” Trey said, snapping off his gloves.

“Is it? If he’s dead, in what sense is he dead?”

“In the dead sense,” Trey replied.

“Well, his brain may be dead, but his other organs are alive. They can be transplanted.”

“But they’re just organs. Organs can be sustained, even grown outside of a body, independent of a body.”

“The gash on his neck where the transplant surgeon cuts out a lymph node would heal.”

“Those are just cells,” Trey countered. “They’re on automatic pilot. You provide them with blood, they keep going, but there’s nothing meaningful going on.”

“But if Mike Kavanagh were a pregnant woman,” I said, “we could keep him alive in order to bring the baby to term. What could be more meaningful than that? My point is that we just engaged in an operational decision, not a biological one. The end result is still correct, but we shouldn’t pat ourselves on the back and say that we have come to an ontological certainty. We need to be honest about what we’re doing. His brain may be dead, but the rest of him is not dead, and we can use the rest of him. I have no problem with what we’re doing, but I agree with Shewmon: we should think it through more carefully.”

Trey paused, and said, “And that’s what we just did, right?”

“You’re not buying it, are you?”

“No,” he replied.

Trey and I knew very well what would happen when I signed the death certificate. Brain death is a firm, unambiguous, and operationally solid determination, an absolute point of no return for the brain. Any two competent neurologists or neurosurgeons who examine a brain-dead patient will come to the same conclusion, just as we had: this entire brain will never recover, and all the king’s horses and men can’t do a damn thing about it.

The problem is the word
dead
. It muddies the important issue, as does
diagnosis
. Brain death is not a diagnosis—a word that suggests probability—but rather a
determination
. A
diagnosis
raises the specter of false positives, of fallibility, of someone being buried alive. That can only happen if someone does the test incorrectly, and we hadn’t.

“Look, Trey,” I said, “it’s fine to have an operational definition to work with. We couldn’t get through the day without that. But you are in a position, because you are a doctor of the brain, to think about these things more broadly, and you should, because if you don’t, nobody will.”

By then it was after dark. We were standing in the ICU outside of Mike Kavanagh’s room. For an uncomfortably long time, Trey said nothing, did nothing, looked at nothing. Then he made an abrupt about-face, and walked out of the room. It wasn’t a yes, it wasn’t a no, it wasn’t dismissive. But he left a vacuum behind, and it was quickly filled by Elliott, who just happened to be walking by.

“Is he dead yet? The nurses want to know. They want him out of here. The transplant surgeon is lurking.”

“I’m signing the papers now.”

“Well, then,” said Elliott, without irony, satisfaction, or relief, “bring out your dead.”

In
The Wizard of Oz
, after the tragedy of the tornado and the falling house, the medical examiner of Munchkinland was called upon to check under the front porch for the remains of Evanora, the Wicked
Witch of the East. After due consideration, he solemnly pronounced to the mayor:

As Coroner I must aver,
I thoroughly examined her,
And she’s not only merely dead,
She’s really most sincerely dead.

In the case of Mike Kavanagh, Trey was satisfied with “merely dead,” as was the Presidential Commission, the Commonwealth of Massachusetts, and the Vatican. I’m not entirely sure.

13

Boats Against the Current

Based on a true story

“Gilbert thinks he wants to be an ophthalmologist.”

Elliott says this to the window plant as we drift in an eddy of late-afternoon, end-of-the-week inertia. It is Friday, and Elliott has tickets for the symphony. I have a dinner party to go to. We are in my office, kicking off the weekly ritual that will, should the gods find favor in it, restore our enthusiasm for small pleasures.

Gilbert is one of the third-year medical students who have been rounding with us. He’s a short fellow, wears circular, wire-rimmed glasses of the 1920s style, and may or may not have a slight British accent. It’s hard to tell, he speaks so softly. Yet he has a way with patients, Elliott and I have noticed, a way that is difficult to quantify and impossible to teach. It is, in part, a delicate balance between listening, processing, appearing to care, actually caring, and giving the patient what he or she needs, even if it may not be what they want. It is not that he speaks their language, but that he has the knack for translating what they tell him into usable form, then explaining it
back to them in a reassuring way—a rare, seemingly innate skill. It doesn’t hurt that he looks like Harry Potter.

“I saw this guy today with an impulse control disorder,” I tell Elliott, “a Parkinson’s guy. Very interesting. He was going around punching walls, tailgating people because they cut him off. He wanted to get out of the car and sock somebody.” That’s how a patient frames a problem in his own vernacular.

“Too much dopamine agonist,” Elliott says, reframing it in ours.

“Correct. Too much Mirapex, so I lowered his dose.”

That’s what makes medicine medicine. People are letting us in, but we can’t expect them to describe their problem in medical terms, so we reframe what they say in a way that’s usable. We give it coherence. If somebody comes in with numbness or paralysis, with headaches or speech problems, with tremor or confusion, we take the patient’s report, bring it to the level of brain and nervous system operations, then come up with a plan. It can be a very intense chess game—speed chess—because on rounds, we have to act fast. The value we add is the intellectual act of making those moves, and the clarity with which we can do it.

Intuitively, Gilbert seems to comprehend this, and has the potential to put it into action, and yet he has rounded with us long enough that he also sees the price he would pay if he chose neurology over ophthalmology. Neither Elliott nor I need comment on what Gilbert’s pseudo-decision means: that ophthalmology would provide him with a comfortable living, a well-rewarded, relatively stress-free career compared to neurology. He is facing a big decision, yet we understand. Gilbert has glimpsed the uphill road ahead, and has overheard enough conversations like the one Elliott and I are having now.

“That woman I saw last month,” Elliott says, “almost ninety, big stroke, then she got pneumonia. Then we had the family meeting. Flavio was with me. We said, ‘She’s eighty-nine, and at best, if she recovered, she’d be completely paralyzed on her left side, and completely dependent for everything.’ There were two sons who were very outspoken,
telling us that Mom didn’t want to live this way. They said, ‘Please don’t do all these things to her.’ They want comfort measures only. Everyone is in agreement except the daughter, this quiet, spinsterish type, a bit of an oddball, sitting in the corner. She says nothing. The social worker is in the room, a junior resident is in the room, Flavio is in the room. The woman dies a few days later. Two weeks after that a complaint is made against me and Flavio, that we unnecessarily caused her death, that the daughter didn’t understand how her mother could be getting better, then all of a sudden could get so much worse that she died. She says we didn’t give her a chance. She’s really angry. Only now does she speak up to say that we didn’t give her mother a chance.”

There’s nothing to say except what Elliott already knows: that nothing will come of it except stress and aggravation.

“And how was your day?” he asks me.

“I saw a woman who’s going to end up being a disaster. She’s got a lung mass, a cyst in her bone that looks like osteosclerotic myeloma, and a six-month progressive course of ataxia and spasticity. I don’t even know where to start. The hematologists are there, the orthopedists are there, the pulmonary guys are in there. She was supposed to see me at the office next week. The husband called me, frantic, and told me, ‘She can’t walk!’ So I said, ‘Bring her to the emergency room,’ and they admitted her, which was the right thing to do. Then I heard from Elena that Gordon Steever, the bowling alley manager, died last week up in Saugus. And then, get this, I happened to be walking through the ward, and there was this psychotic woman, a Trinidadian woman up there in her little johnny, and I was the only one who could calm her down and lead her back into her room. She was about to scratch someone’s eyes out, and I calmly put my hands on her shoulders and steered her like a car, and led her back into the room. Then a social worker comes up to me and says, ‘You know, I don’t think you ought to be touching her like that.’”

“And so we beat on,” says Elliott, “boats against the current.”

.   .   .

Arwen Cleary, the ice skater with multiple strokes, returned home and lives a cloistered life with the help of her daughters and her boyfriend. Her right visual field is permanently impaired, yet her occipital cortex does not register that fact, even though her frontal cortex does. She did not get the surgery to address the growth on her heart valve; the growth seems to have disappeared. Why? We don’t know. We have to hope that the blood thinners will prevent any further strokes. I have suggested that she allow us to fit her with glasses that will reveal the right side of her world to the functioning left side of her visual field, and she has yet to take me up on it.

Mrs. Gyftopoulos has returned to a fairly normal life, as have Vincent Talma, and Cindy Song, although they all have some deficits: a hole in the head, a barely detectable speech problem, a missing ovary. During the time they passed through the wards, most of their fellow patients came out okay: the strokes, accounting for about 20 percent of our cases, usually resolve, and future ones are staved off with blood thinners. The aneurysms, most of them anyway, are neutralized through surgery. The seizures are treated with various antiepileptic drugs. We cleared the patients off our lists one by one. Some of them will have follow-up appointments as outpatients, many of them we will never hear from again. The only cases whose long-term resolutions I can be entirely sure of are those that ended in death, and even then, as in the case of Gordon Steever, the candlepin bowling man, I don’t always find out how it happened.

It is at this point that I should confess that there is no candlepin bowling alley in Dorchester, that Vincent Talma was not playing softball when he became aphasic, that Louise Nagle did not go to Cornell, that Ruby Antoine was a laborer, but not a mechanic, that Tikvah does not live in Yorkville, that that is not her real name, that all of the other patient names, save one, along with the names of local community hospitals, were invented. We have tried to tell these stories truthfully in all essential elements, if obliquely in the inessentials, which is to say that for the sake of confidentiality, the patients we have described,
with the exception of Michael J. Fox, are mere analogues of actual people, yet neurological doppelgangers. The residents and many of the other physicians named and described here are also avatars, but the situations are true enough, the diseases, disorders, lesions, and tumors are painfully real, the dialogue is 70 percent verbatim, 20 percent recollected, and 10 percent extrapolated.

This is also where I should point out that this is not an “as-told-to” book, but rather a co-written, co-experienced work. It had to be. It required two sets of eyes, two entirely different perspectives. I would not have been able to tell these stories on my own because, quite simply, I was too focused on helping each patient to see beyond their immediate medical problems. No physician, in the moment, can simultaneously serve the patient and the story. This book was made possible by someone who was willing to experience life on the ward with me, even without me, and merge our combined experiences into one voice, someone who kept notes, someone who listened to the patients and residents as closely as I did, and heard what I did not, someone who bothered to look out of the window, someone who was curious enough to keep asking, “What was that about?” and “Whatever happened to . . . ?”

Gordon Steever did die in a psychiatric nursing home four months after being discharged from the Brigham. His brain was not autopsied. We still do not know what caused his confusion, and we never will. Wally Maskart went home after a two-month stay at a psychiatric facility, where he showed steady improvement. He continues to care for his wife and manage the family finances. He remembers little of his stay at the Brigham, except that his thinking was fuzzy. He no longer thinks I am Sanjay Sanjanista, but he still insists that he was at Game 6, and saw Dwight Evans make The Catch, and I believe him. It turns out that he did not sell, but rather kept, the locomotive—the vintage Lionel Red Comet that he bought in a pique of mania—and he has no regrets about the expense. Old Doc Vandermeer died from complications following the surgery to remove his meningioma. It
was worth trying, because the growing tumor would have further clouded his mind. Michael J. Fox went on to star in a new television series in which he plays a news anchorman who is diagnosed with Parkinson’s, and has to reorganize his life in order to deal with that fact. It is a comedy. The idea, he told us, is “to put it out there and say, ‘This is my life. This is what it’s like to live with it.’” At this stage in his career, he adds, “I can do anything, I can play anybody, as long as they have Parkinson’s.”

“The pope?”

“I could play the pope.”

Ultimately, he did give me a Ferrari, a Testarossa, not made in Italy but rather made in Japan by Mattel. “But vintage!” he said, by way of consolation.

In the 1990s, when I saw my mentor, Raymond Adams, failing physically due to congestive heart failure, I saw what he represented fading like a painting in the sun, and I wondered whether I should try to sustain his exquisite clinical-pathological correlation method through a dark age, on the chance that there would be a renaissance, and that it would come back into favor. For a time I thought,
Yes, that is what I will do.
Then I woke up and went my own way.

Raymond Adams, C. Miller Fisher, and even Doc Vandermeer belonged to a generation of physicians who were so wrapped up in the ethos of what they were doing that they inadvertently gave rise to cults of personality that warped the sensibilities of their acolytes. The ethos served a social good, so the cults survived for time, but have now made way for a collective caring for patients in which process has supplanted personality. Part of my role today is regrettably to lead the next generation of neurologists through the transition from the old school to a new one, to turn them into interchangeable parts in the new health-care system. Yet I want them all to be best in show. I want them to live the
vita medicalis
, and get their neurology from their patients’ stories, not from books and Web sites. Otherwise, they will
be merely part of a dystopian and impoverished version of medicine that is disconnected from life, from suffering, even from death.

I am glad that Hannah got to know Doc Vandermeer, if only in passing. Like my mentors, he was one of the greats of twentieth-century medicine, and he saved countless lives by dedicating his own life, sacrificing it in a way, to the relief of suffering. She got to see the mannerisms of the Old Guard, for better and worse: the insufferable circumlocution, the lifestyle bordering on self-negligence, the elitism tucked behind a mask of benevolence, but also a dedication to science and service verging on the messianic. It also gave her some perspective on me.

I am now in my sixties, a fact that weighed on my mind when I first met Doc Vandermeer on the ward. Our encounter stirred up thoughts, many of them tough to face, of obsolescence, of becoming an anachronism. I can take some solace in knowing that the careful, thoughtful, involved, committed clinician, the one dedicated to service and the art of neurology, will survive in people like Hannah, and will be carried on with a completely different style than my own, refreshingly so, and in many different places.

Hannah had hoped to stay on at the Brigham. Instead, she took a position as a fellow in neuro-infectious diseases at another top program, far from Boston. She was disappointed about leaving, but I thought it was for the best. Wherever she goes, I want her to be the person whose opinion is sought out above all others, the one who is told: “Dr. Ross, we have a case of severe headaches, drop attacks, and seizures.” And instead of saying, “Oh, the differential diagnosis is such-and-such,” she will say, “What are the seizures like? Tell me about the seizures.” She will query the patient, and she will show the residents that if you are willing to take the time to ask and to listen, the patient will usually have the answers.