Reaching Down the Rabbit Hole (14 page)

“Did you tell Ruby all that?”

“Yes. We talked for a long time. He asked me about the hospital, about what I thought of it.”

“What
do
you think of it?”

“Well you know, I was a patient here. I had surgery here ten years ago. Not only was I a patient here, but I thought so much of this institution that I pursued a job here.”

“But as a black man . . .”

“Well, there were problems. When I came here for surgery, I was on the sixteenth floor in the Cardiovascular Center, and no one from the clergy came and visited me for days. I remember saying to my wife, ‘As an urban institution sitting in the middle of where we dwell, how can they not have anyone that looks like us as a chaplain here?’ So I decided that I’m going to have to put some things in place to see if I could change that.”

“And since then?”

“I feel that it has changed tremendously. I think going out into the community and having clinics and hiring minority doctors and nurses has helped. I’m finding that there are more African American patients coming than when I first started.”

Still wondering what had gone on with Ruby, yet still reluctant to ask, I kept up an oblique line of questioning. “Do people ask you about deep existential, theological issues or problems? Do they ask you: Is there a God?”

“Many times. You always have that question: ‘Is there a God? And if there is a God, why am I going through this?’ Back when I was the chaplain on duty, just starting part-time, a young lady was med-flighted here. She was pregnant. They had to rush her into surgery, open her up, take out the baby, all wrapped up in a blanket, and they gave it to me to bless because they knew the baby was not going to live. And one of the nurses said, ‘You need to go in there and pray for the mother.’ She was coding, blood was going everywhere, and this was the first time I’d ever seen someone with a human heart in their hand, pumping it to try to keep her alive. I blessed the baby, I prayed for the mother. She lived, but the baby died. That stuck with me. I met another young lady just the other day. She had lost her daughter a few
months earlier. Her husband was in the hospital, and his prognosis was not too good. She said, ‘I’m mad as hell with God. As a matter of fact, I don’t want to hear nothing about God.’ And this is a person who professed to go to church. So there are times when you have to be able to let them pour out exactly how they feel without condemning them. You don’t have to prove to them that there is a God. Sometimes it’s just what it is. They have these questions—‘I’m serving God. Why am I sick? I’ve been a good person, why is this happening? Why has my child died?’—I don’t have the answer to a lot of these things. I sit there and let them pour it out, and sometimes they say, ‘Thank you just for listening.’”

“And Ruby . . .”

“. . . he has his reasons. Let’s leave it at that.”

As it turned out, Ruby did have some good reasons, but I would not discover them until it was all over. And we still had a long way to go.

A month later, Ruby’s primary care physician talked him into getting a spinal tap at the Brigham. I have no idea how he managed that, but by the time it happened, whatever blood had been in the spinal fluid would have been mostly reabsorbed. I did it anyway, and the spinal fluid did show the remnants of old blood, indicating that he had indeed had a subarachnoid hemorrhage. I then miraculously succeeded in persuading Ruby to have an angiogram, and the angiogram revealed a very large, multilobed, anterior cerebral arterial aneurysm that justifies its name: “berry aneurysm.” Moreover, in Ruby’s case it was like a mutant blackberry rather than the usual small blueberry. There it was in black and white, a bulging blob hanging off the artery, ready to explode.

“I don’t want it fixed.”

Here we go again
, I thought. I explained to him that now he had actually left the starting line. If he stopped in the middle of the race and decided that he wasn’t turning back, then he’d just be stuck in
the middle of the track with something big bearing down on him, and then he’d really be asking for it. Fed up with niceties, I said as much: “Then you’re screwed, Ruby!” But he wouldn’t listen, and again called his wife to pick him up from the hospital.

“What’s with this guy, Edgar?” I asked the next day.

“Well, he has his reasons,” he replied, somewhat obtusely. “We just have to accept them.”

Three months later I learned that Ruby’s primary care doctor, who must have had Periclean powers of persuasion, succeeded in convincing him to have the surgery—finally! Unbeknownst to me, he ended up at another hospital, where the operation almost wrecked him. It happens, even with the best surgeons.

The definitive cure for an anterior cerebral aneurysm is an extremely delicate procedure. It involves the placing of a clip that looks like a miniature distorted clothespin on the neck of the aneurysm. The trick of it lies in choosing the right clip, choosing the right place to put it, getting just the right angle, and making sure that you seal off the neck of the aneurysm so that no blood can get into it, all the while avoiding all of the surrounding vessels.
All
of them. The clips are made with little cutouts, allowing them to put pressure only on the aneurysm and not on any surrounding blood vessels. But in that area of the brain it is very easy to nab tiny vessels that feed the frontal lobes. When the surgeon put the clip in, he probably nipped a few of these and turned Ruby Antoine into a Randle McMurphy: a dull, frontal-lobotomized kind of guy, a guy who can never go back to work. He was in his late thirties at the time, with two kids.

A few months later I ran into a colleague who had at one time treated Ruby. “Did you see this guy?” he asked.

“Oh, boy, did I see this guy. I spent hours trying to convince him to do something.”

“So did I,” he said. “I guess the patient’s always right.”

And yet the lesson isn’t that he was right. Looking at Ruby’s angiogram
even now, I can state with a high degree of certainty that he would have died had he bled again, and he most certainly would have bled again with that kind of aneurysm. I would still give the same advice to anyone in Ruby’s situation. It wasn’t a question of choosing the wrong hospital. He was operated on by an extremely capable surgeon. There is an alternative to clipping called endovascular coiling, in which the surgeon gets at the aneurysm via a micro-catheter fed through the artery, but that procedure has problems, too.

Six months later, I screwed up the courage to ask Edgar directly why Ruby had refused all counsel when he first came here, and what changed his mind.

“Oh! Well, there was some question in his mind whether you were going to use him for an experiment, as a guinea pig.” This hit me like a ton of bricks. Later that afternoon, as Elliott and I sat in my office reviewing the events of the day, I told him what Edgar had said about Ruby. I still couldn’t wrap my mind around it.

“Haven’t you ever heard of The Plan?” Elliott asked.

“Vaguely.”

“It helps if you lived in DC during the Marion Barry years. I was at Georgetown back then. Everybody knew about The Plan. Supposedly, it was an effort by whites to retake control of city government. Maybe some whites did have a plan like that, but it was mostly a figment of the black press, just one piece of a broader conspiracy theory. Black genocide. You know: the World Health Organization created the HIV virus in the 1970s, the CIA used it in an experiment in Africa while they pumped drugs into the black ghettos here at home. That sort of thing. Abortion as an anti-black eugenics plan promoted by Planned Parenthood. Then you have the real stuff like the Tuskegee syphilis experiment.”

So Ruby wasn’t too far off base. The Tuskegee syphilis experiment was one of the most notorious clinical studies ever conducted. From 1932 to 1972, the U.S. Public Health Service offered free health care and meals to rural black men in return for being allowed to follow the
progress of their untreated syphilis, without informing them of their disease or the existence of treatments to cure it.

“Of course,” Elliott added, “we do experiments on people here all the time.”

“With informed consent.”

“Yes, but that’s a finer point that might understandably be lost on your patient. Seems to me his fear was a pretty rational one.”

“Well,” I conceded, “I never would have guessed it in a million years.”

“What we’ve got here,” said Elliott, quoting
Cool Hand Luke
, “is failure to communicate. You had three parallel belief systems going on: yours, the rational, scientific belief system, the one that can’t even conceive of something like The Plan; Edgar’s faith-based belief system of a learned man, but not a man of science; then you had Ruby’s. Unless you could spend some time in that front-end shop on Huntington Ave, maybe hang out with his friends, put yourself in his shoes, I don’t think you’re going to get much insight into his belief system, but it was as legitimate to him as yours is to you.”

It occurred to me that Edgar is willing to hold two competing ideas simultaneously: science is a good, medicine is a good, but there’s also something beyond it. Then, as Elliott pointed out, there’s Ruby and his belief system. He’s not comfortable even stepping into this hospital. His comfort level going to Boston City Hospital is much higher because he knows, or at least believes, that they’re not going to experiment on him.

“You may have put some doubt into that worldview,” Elliott said. “Edgar told me that Ruby liked you, put some trust in you. Maybe that’s why he finally caved and agreed to the operation. Where is he now?”

“I don’t know,” I said. “All I know is that he’s alive, which he wouldn’t be if they hadn’t operated on him.”

“So did we do no harm?”

I had no answer. Medicine is like the laughing and crying masks of
the theater—comedy and drama. There is never one side that is right and another side that is wrong. The risk calculations are in the doctor’s head, and no algorithm has yet to do better. Yet ultimately, as far as the hospital is concerned, the patient is always right because personal autonomy trumps probabilistic outcomes. You have to respect their wishes as human beings, we are told. But if you ask me whether the customer is always right, I would say, “Not at all.” The patient is so very often dead wrong, and very much so when it comes to his own brain.

7

A Story Is Worth a Thousand Pictures

Nine songs of innocence and experience

1. LOOK, LISTEN, FEEL!

On the first day of my second year of medical school at Cornell, I was sitting in the next to the last row of a small, steeply sloped auditorium. A legendary cardiologist and internist named Elliot Hochstein was on stage preparing to teach a course on physical diagnosis: how to properly examine a patient. For some reason, the lighting in the back of the hall didn’t work quite right, so the stage, the speaker, and the first five rows were always in the light, while the back rows, though not dark, were dim. It reminded me of a baseball stadium when the sun casts a shadow across the infield. I used to say, “They need to put a foul pole in here.”

There were eighty-nine of us in the entering class, and we were all in attendance. It was mandatory. Next to me sat a woman named Judy Vanak, and next to her a hippie-type guy named Roger Stuxman. Almost four decades later I can recall Judy very well because there were
only five women in our class. We had more Mormons than women. We had more hippies than women.

Ten minutes into the lecture I was startled by the weight of a heavy hand on my shoulder. It belonged to a guy with very long hair, who climbed right over me, sinuously propelling himself like a cat into the next row, then over that row, and onward to the front. As he made his way forward, literally walking on all fours over one shoulder after another, our attention was drawn to a second, third, and fourth wave of the invasion. Several women crawled over the backs of our seats, followed by more long-haired men. The weirdest thing I had ever experienced. Alarm gave way to annoyance, then astonishment. They swept over the entire entering class, crossing from the dark into the light, more than a dozen of them, and assembled loosely at the front of the auditorium, where they started belting out the anthem,
Hair
.

It was the Broadway cast.

Hochstein came up with the idea. The show’s producer was his patient. They did the entire musical number, a mind-blower, and after they left, Hochstein said to us, “What do you think?”

A guy named Tory, a very talkative kid who always sat in the front row in order to ask inane questions (and who, of course, went on to become a Beverly Hills gynecologist), said, “Geez, that was an incredible experience.”

And Hochstein replied, “Exactly! The trick to medicine is to have it be an active experience, not to be a passive observer. Get in there fully with your senses, and then you’ll be a great clinician. Look, listen, feel! Don’t just stand there. Leave a big mental opening, because if you go into an encounter knowing what you’re going to find, you
will
find it, and yet you’ll miss the important stuff. And the important findings when you are examining a patient are multimodal. It’s not just: you hit the knee with a reflex hammer and the leg goes up this high, maybe too much, maybe too little. No! It’s the whole ensemble. It’s all the senses engaged together.”

He was onto something, because the actors had a very physical
presence. He was talking animatedly about the medical examination, yet he was also talking about the performance we had just seen. When they went from the dark to the light it was thrillingly, intensely physical. The feeling of somebody else’s body touching and even grabbing your shoulder was meant to make us feel uncomfortable and to acquaint us with the idea of touching others, our future patients.

Hochstein was saying, “You need to feel that. You need to go with that. A young woman patient comes in and you’re going to feel her liver, okay? You cannot think of it as an inanimate object. You’re not feeling a block of wood. You know that kinesthetic sense of someone touching you, like those actors, moving you around, climbing all over you? That’s what the patient feels. You’ve got to be in tune with them when you’re doing that.”

2. TAKE THE PEN

When you start in medicine, before you go out onto the ward, you have not yet made the sociologic transition to being a doctor. Consequently, there are a lot of things that go through your mind that are uncomfortable, and many of us, including myself, began to take on the patients’ suffering, especially when we treated patients who were dying of cancer. It was and is not unusual for these patients to identify everything other than their disease, including us doctors, as the problem: the elevators don’t work, the food is lousy, the nurses are rude. What they’re angry at is the fact that they have cancer, they’re going to die, and nothing they or anyone else can do will change that fact. For a young doctor, it is all too easy to take that on and go home with it, and it can destroy you.

To avoid this, we were required to meet individually and in small groups with a psychiatrist. Mine, a very prominent older therapist, was a dud, and I got very little out of our sessions. But one of my colleagues, a very empathic guy who eventually went into oncology, was
more fortunate. In one of his sessions, he was sitting across the room from the shrink, articulating how much trouble he was having with his patients’ anger, their problems, their complaints. The psychiatrist didn’t say a thing, but he took a fancy fountain pen out of his shirt pocket and held it out in front of him at arm’s length, as though presenting it. He just held it there. My friend, who was about twenty-six or twenty-seven at the time, got up from his chair, walked over to the psychiatrist, and took the pen.

The shrink said, “Did you want that pen?”

My friend said, “No, not really.”

“Then why did you take it?”

“I thought I was supposed to take it.”

“The patients are holding out their troubles. They are not really asking you to take them. You should only take them if you want or need to take them. Otherwise, leave it. They’ll get along without your suffering. You have another job to do.”

A lesser therapist might have simply interrupted, and said, “It’s hard to know what’s on a patient’s mind, and you can’t take on their troubles. You have to be able to distance yourself without being unsympathetic.” All true, but without the pen, easy to ignore. The pen sold it.

3. TAKE THE WALLET

At about the same time, when I was an intern in San Francisco, we treated a farmer from the Sacramento area who had coccidioidomycosis meningitis, also known as valley fever. Stockton, California, was ground zero for the disease. It is carried by airborne dust particles that settle into the lungs, causing a pneumonia-like infection that can develop into an inflammation of the brain’s lining. The treatment involves a lumbar spinal tap that allows medicine to be injected into the spinal canal daily, a very invasive regimen requiring a long stay in the hospital.

As serious as this was, the farmer had a more pressing problem. His wife was in the early stages of dementia, and she was alone on their farm with their two German shepherds. He desperately needed the treatment, and she desperately needed him.

Every day, when the team dropped by on rounds, the senior resident, whose name was Chin, told the farmer he was doing better, that his lungs were getting better, and every day the farmer would reply by asking, “Can I go home today?” The first time this happened, Chin said: “You have to understand that you have a serious infection, and you have to get antibiotic injections for the next two weeks.” On rounds the following day, when the farmer again asked his one and only question: “Can I go home today?” Chin went through it all again, but less patiently: “Two weeks.” After several days of this routine we were all frustrated, but Chin, who saw the world and all the people in it in the most literal terms, was beside himself. It became a problem.

One of the residents on the team, name of Kravitz, was a bit of an amateur magician and also a talented pickpocket, undoubtedly the product of a misspent youth. Tricking people means knowing and controlling what’s on their minds. That was Kravitz’s real talent. One day, after yet another predictable Q&A with the farmer, and during the ensuing Pavlovian decompensation by poor old Chin, Kravitz expertly snuck up from behind and lifted Chin’s wallet in full view of all of us. He then suggested that we go down to lunch. He knew that Chin would offer to pay for everyone because we were interns, because he was the senior resident, because he was a very generous guy, and because Chin always paid. In the cafeteria, when he went to reach into his pocket, Chin said, “Oh my God! Where’s my wallet?” As he frantically rifled through his other pockets, we saw him run through a mental inventory. “I was in the lab, then I went to pathology. I was in the chairman’s office, and now I don’t have it.” He started to flip out. The rest of us were by now seated at a table, everyone but Chin, who kept on about the wallet.

Kravitz, who had forked over the money to get us past the cashier,
changed the subject. “Let’s talk about the clotting cascade,” he said, meaning a diagrammable sequence of reactions in the process of blood coagulation. As he started to draw it out on a napkin, Chin, whose job was to lead us through such lessons, said, “I can’t concentrate on that! How am I supposed to concentrate on that? I can’t find my wallet!”

Kravitz calmly stood up and said, “Here’s your wallet. Now you know what that farmer feels like. He’s got a demented wife at home roaming the farm half-dressed. No one’s feeding the dogs. No one’s feeding her. Do you expect him to focus on all this bullshit that we’re telling him when all he cares about is getting back to his wife?” Chin checked inside the wallet. We weren’t sure whether he was going to thank Kravitz or kill him. Reading his mind, Kravitz smiled and said, “Oh, and by the way, thanks for lunch.”

4. NEVER SHOOT A SINGING BIRD

She was young (so was I), she was strikingly beautiful even among nineteen-year-olds (I was neither), and she was seriously ill. It was the ebbing of the Age of Aquarius, and I was working the night shift in the emergency room at the University of California Medical Center off Parnassus Avenue in the post-hippie San Francisco of the mid-1970s—a vibrant, exciting place to be, even if it was somewhat hungover from the ’60s. All was not well in the city by the bay, and from our perch overlooking Golden Gate Park, my fellow residents and I had front-row seats for the fallout.

Her name was Danielle, her boyfriend’s name was unimportant, and we assumed that both of them had been taking drugs. When they arrived late one summer night, I noted how disheveled they both were, how typical of the city at that time. The boyfriend told me, with a notable lack of urgency, that she had had several vigorous epileptic seizures on the street after a party. He professed to love her, but could
not tell me where she came from, who her parents were, or how I could get in touch with them. He seemed fairly nonchalant about the whole affair, in keeping with the tenor of the times.

Before I could get her into an examining room she lost consciousness. Her pupils were normal and she was breathing quickly. We did the usual workup—blood and urine tests for drug screens. As I was walking out of the room she was overtaken with grand mal convulsions that continued for a good two minutes. She then began to turn blue despite the administration of oxygen, and her blood pressure shot through the roof. She broke two teeth and wet herself. We immediately brought her up to the intensive care unit where she continued to have seizures intermittently without waking up. In other words, she was in
status epilepticus
.

Over the next six hours, I made desperate attempts to stop the seizures with all of the usual medications. We managed to bring her downstairs for a CT scan. It showed no abnormality, no evidence of the kind of clots in the veins overlying her brain that, in a woman her age, might have brought about the seizures. It was nearing 5:00 a.m. I had been with her through the night. The sun was infusing colors into the sky over the eastern edge of Parnassus Avenue. Out of the depths of a partially formed instinct, and even though she did not look pregnant, I called the pharmacy and asked them to send up a drip with magnesium, the tried-and-true treatment for eclampsia. We started the drip and, miraculously, the seizures stopped.

Eclampsia, a problem associated with pregnancy, causes a spectrum of symptoms similar to hers, but I hadn’t even thought to check whether she was pregnant, so I ordered the test. I assumed she had been with the boyfriend for a while, that they were laid back about everything, including birth control, that they lived under the protective aura of cluelessness: “Everything’s cool, everything will be okay.” But I had a feeling it would not be.

When the chairman of medicine came by to make rounds with us later that morning, I told him the whole story and said that I thought
her urine pregnancy test would come back positive. While we were standing there, I got a phone call from the lab informing me that it was negative. I asked him what I should do, and he said, “Never shoot a singing bird. Keep the magnesium going.” We did not have a diagnosis, I had no more hunches, but it seemed to help. So I let the bird sing.

The seizures stopped but Danielle never woke up. On the following morning she died, not from the seizures, but from a separate problem of bacterial septicemia. There was no next of kin that we could track down, and the boyfriend drifted off into the dawn. Curiously, the medical examiner turned down the case, so we never found out what caused the seizures. Even though I lost my patient, the chairman’s remark has never left me. We frequently do not know the cause of a problem, but we sometimes back into a good treatment. When that happens, stop being a scientist, and just keep going.