Reaching Down the Rabbit Hole (13 page)

First I knock, then I enter. I see that the shades are drawn, the lights are off. It is not unusual to walk into a patient’s darkened room. If somebody has meningitis or a subarachnoid hemorrhage, the light truly hurts their eyes, and the nurse will have posted a cautionary sign outside the door. There’s no sign on this door, leading me to believe there will be a messy psychological situation waiting for me inside.

As my eyes adjust, I see a young woman on the bed, wearing pajamas with pink slippers, hugging a large pink teddy bear with a bow in its hair. I also see her mother, eyeing me suspiciously from the lounge chair at the side of the bed. My snap diagnosis: conversion disorder, pain, dysfunctional family situation, possible childhood sexual abuse.

“Hi, I’m sorry to intrude. I’m Dr. Ropper, and I’m in charge of the neurology service, so I will be your doctor.”

The mother stands up immediately and inserts herself between me and the foot of the bed. She is holding a stack of papers in manila folders under her left arm, and she takes her glasses off her nose, letting them dangle on the chain in front of her.

“She really doesn’t want to see any doctors right now. And she hasn’t gotten her Demerol.”

“Maybe I can examine her before we get some Demerol.”

“I don’t know why you simply can’t read her records. She has reflex sympathetic dystrophy, and she needs her pain medication now.”

I try to poke my head around her mother’s shoulder to peer at the patient. “That’s a nice teddy bear you have.”

“I take him everywhere.”

The mother shuffles to the side of the bed, level with her daughter’s waist, and will not let me go any further.

“We go through this all the time. New doctors thinking they have a better solution and trying to get her off her pain medicine.”

“We go through this all of the time, too,” I’m tempted to say. “Mothers who poison their daughters so that they can nurse them through recovery.”

What I wouldn’t give to be Irish right about now.

6

Do No Harm

A walking time bomb tests the limits of good sense

It was a hazy, humid, and windless mid-August afternoon—wicked hot, as the locals like to say. At a car-strewn front-end shop on Huntington Avenue, Ruby Antoine rolled under a Monte Carlo and set to work on the transmission. Because the garage had only one working lift, and it was occupied, Ruby had the front of the car jacked. As he was pulling the drive shaft out, at the moment of maximum strain, he felt the sudden onrush of a headache so intense that he thought his head would explode. Barely able to roll himself out on the dolly, he summoned all of his strength to haul himself up against the standing tool cabinet, where nausea overtook him and he vomited clear across the work bay.

“Holy shit, Ruby,” his boss said. “What’s going on?”

“Wicked headache, man. I have no idea where that came from.”

“We’ve got to get you to a hospital.”

“No, man. I’ll be alright.” But he sure as hell didn’t look alright.

By the time his objections had been overcome and he had arrived at the emergency room at Boston City Hospital, the headache was
almost gone, and a casual exam turned up nothing. Ruby was so evasive and in such a hurry to get home that the intern became suspicious, thinking it was probably drugs. The doctor there ordered a CT scan as a routine precaution. It came back normal, and Ruby was discharged. He was fine, or so he thought.

Four days later, Ruby was at home on the couch playing with his kids and watching TV when the same thing happened. He again refused to go to the emergency room, but as he sat clutching his head, his wife grabbed the keys to the car, took his arm, and led him outside. He was so incapacitated by pain that for once his wife prevailed, and this time took him to the Brigham, which is only blocks from their house.

It is a telling fact, entirely consistent with the sad history of race relations in Boston, that despite the predominantly African American composition of its immediate neighborhood, there are not too many black faces in the crowd at the Brigham, a trait it shares with Fenway Park just down the road. But Ruby’s wife had no use for such folk-ways, and didn’t want Ruby getting sent right back out the door. So she brought him to us.

After hearing the history, the Emergency Department resident got yet another CT scan while waiting for a neurological consult. To the resident’s relief, nothing showed up on the scan, but I was less sanguine. “I’m really worried you’ve had a subarachnoid hemorrhage,” I said to Ruby at our first meeting. “Even though it doesn’t show up on the scan, we need to do a spinal tap.”

A subarachnoid hemorrhage, or burst aneurysm, is one of the most treacherous diseases in medicine. Although considered a type of stroke (or to use the Boston vernacular, a “shock”) because it happens suddenly and occurs in the head, it bears no resemblance to the paralysis or speech trouble usually associated with a stroke. An aneurysm is a rounded pouch on one of the blood vessels at the bottom of the brain. If it reaches a critical size and form, it can burst open with the entire force of the body’s blood pressure. Blood then fills the
spaces around the brain in a split second and causes a thunderbolt of a headache that no one forgets and many don’t survive. One-third of patients who do survive have a re-rupture in days, and half of those people die. Ruby had dodged the thunderbolt twice. He had had two bleeds, which resolved, although his blood had now mixed with the spinal fluid surrounding his brain—not enough, apparently, to show up on the CT scan (in about 5 percent of patients it does not), but enough for us to confirm it if we could get a lumbar puncture.

“No way,” said Ruby. “That’s not gonna happen. No way somebody is sticking a needle in my spine.” And that was just the beginning of a long and frustrating story.

There are three kinds of patients who show up on the ward: the risk-neutral, the risk-averse, and the risk-resistant. We rarely see a fourth kind, the risk-takers, who instead show up in the morgue, if they show up at all. Most of the time they go straight to the funeral home. Risk-takers don’t come to the hospital of their own volition. They simply refuse to go to a doctor for anything. By contrast, risk-neutral people, a term that describes most of our patients, go to the doctor because they believe in modern medicine. They listen, they question, they comprehend, and for the most part, they cooperate. Risk-averse patients, on the other hand, need reassurance. These are the people who have to know everything. They have to call everyone. They need a better opinion. They won’t have the operation until they’ve had five second opinions. They anguish, they’re neurotic, but in the end they do what all normal people do when confronted with choices. Then there are the risk-resistant, who are simply recalcitrant, and give us the most trouble. They act as if they have something to hide, they often do have something to hide, and they hide it even when it would be in their best interest to let us know about it up front. Ruby Antoine fell into this last category.

One way to deal with the risk-resistant is to have them sign a piece of paper acknowledging that they understand the risks of doing
nothing, then send them home. The problem with Ruby was that, as enterprising and personable as he seemed, he had never learned to read or write. Ruby Antoine was a rangy, muscular, engaging, yet infuriating man. He had survived and even thrived in the literate world through a combination of obstinacy and charm. Instead of withdrawing into himself out of embarrassment or shame, he overcompensated by developing hands-on skills—he fixed cars, built stone walls, and had even learned blacksmithing. A jack-of-all-trades, he had grown up on Cape Cod, had had very little formal schooling, and had navigated his way through life using his ability to recognize food labels and road signs as symbols rather than as text. He was unimpressed by me and skeptical of what I was telling him. Not only was he not going to agree to the tests I wanted, Ruby was not going to sign a waiver. He wasn’t even going to glance at it.

Those who know anything about the oath of Hippocrates, which is still recited at some medical school graduation ceremonies, usually recall its main precept:
primum non nocere
—“First, do no harm.” For many physicians, this is not only a guiding ethos, but a justification for conservatism or, more precisely, for doing nothing beyond prescribing aspirin and bed rest. But the Hippocratic dictum in the modern era creates an unsettling conundrum: doing nothing with the knowledge we have in a case like Ruby’s risks tremendous harm. The risks of failing to make the diagnosis of a ruptured aneurysm are far greater than the risks of a spinal tap, an angiogram, and doing an operation.

If Ruby had been a “good” patient, a risk-neutral one, he would have agreed to the spinal tap after a bit of reassurance that my residents have done hundreds of them, even on little old ladies, and while he might have ended up with a bad headache for his troubles, it would have given us some vital information. If the spinal fluid revealed the red-brown color typical of broken-down blood cells, it would have confirmed the diagnosis. After that, an angiogram—essentially an X-ray that reveals the outline of the cerebral arteries—would have
isolated the aneurysm, and led to a rapid treatment. Instead Ruby squandered time, resources, and a considerable amount of goodwill by sitting there and refusing all of our attempts to either move his case forward or move it out the door.

“I just want to go home,” he said.

“But you’re a walking time bomb.”

“Yeah, and I’m walking right out of here.”

He certainly had that right, but before throwing in the towel, I reached out to Edgar St. Claire, one of the hospital clergy, whose somewhat easy manner belies the fact he takes himself and what he does very seriously. Hospital ministering is a special corner of ecumenical life. End of life, fearing the end of life, having a loved one near the end of life: this is the proverbial foxhole that lacks atheists. In our foxhole, there are on staff three priests, a female reform rabbi, a Baptist minister (Edgar), and several denominations on call, including Greek Orthodox, Muslim, and Orthodox Jewish. I have not seen Baha’i but I’m pretty sure we could find one.

Hospital clergy are schooled in the human spirit, whereas I’m schooled mainly in the human body. They are more sensitive than I to a patient’s belief system, cultural context, and motivations. Edgar in particular is the ultimate humanist. When he comes into a situation, there is no right and no wrong. “I’m here to administer to the soul and spirit of this individual,” he has told me, “so I have to understand who this person is.” I had to concede that I didn’t know who Ruby Antoine was, and I needed help with that.

“Edgar,” I said, “I have this problem. I think this guy is a danger to himself. I don’t want you to talk him into the spinal tap. I just want you to get him to reconsider the whole situation.” So Edgar and I went to see Ruby to hear why he didn’t want the tap.

“Because I don’t want to get paralyzed . . . because I got better the first time . . . because I’ll get better again. I ain’t worried I might die of some burst aneurysm I may not even have.”

Ruby was never angry or sarcastic, merely insistent. He was difficult,
but in a good-natured way. He let you know there was nothing that he couldn’t do, and he was ready to prove it. Yet intentionally or not, he was pushing all of my buttons, and I might have blown a gasket had it not been for the sheer absurdity of the situation, or at least one very small and entirely irrelevant detail: I couldn’t get over his hairy legs. Most men lose their hair below the sock line, but Ruby retained thick, bushy hair all the way down to the ankles, even on the back of his calves. Whenever I visited, he tended to lean back on his left elbow and drape his legs over the side of the hospital bed, a languid posture that made him speak out of the right side of his mouth and upward toward the ceiling like a Bedouin warlord. All that was missing was a hookah and an oriental carpet. He was anything but effeminate, but when he crossed his right leg over his left
below
the knee it left a peculiar impression. It isn’t natural for most men to cross their legs that way, and it made me wish they had found him a gown of the right size, or, even better, a pair of blue hospital pants.

I introduced Edgar, and left the two of them to it. Edgar spent an hour with Ruby, came out, and said, “I did what I could, but in the end, you have to respect his wishes as a human being.” I went back in and gave Ruby a long look, and thought, but did not say,
You are a schmuck.
I would bet that Ruby looked at me and thought more or less the same thing.

Edgar came back the next day and the day after that, and the two men went through the same dance with the same result. “We’re trying to save your life. You’ve got a wife and two lovely children. They need you.”

“Well, they got me. And I got to get back to work ’cause I ain’t making money sitting here.”

On the third day, after he was discharged, I was still having trouble accepting his wishes as a human being.

Edgar St. Claire is someone you notice—short and square, but not stocky; broad shouldered, but just as broad at the waist. At five feet
five inches, with a plodding and wide-based gait, and almost always carrying a briefcase or folio under his right arm, he is easily spotted from two hundred yards away. He most often wears dark brown or black suits of a noticeably elegant design, with well-chosen ties of colorful fractal patterns, often liturgical purple. With his head held erect or tilted slightly backward, he exudes a stately demeanor while avoiding intimacy. His most arresting aspect is the timbre and pattern of his speech. His accent is clearly Caribbean, but measured in its excess so as to allow a British lilt to emerge from the phonation—with a well-taken breath halfway through each sentence, just for emphasis.

“Edgar, how did you get into this business?”

It was the following day. I was trying to process what had happened, or not happened. I wanted a story to distract me, and Edgar gave me one.

“You know, in Jamaica, when I was young, I was not too much involved with the church. I had too many folks in my family that were Baptist ministers, and I didn’t like the idea of having to depend on people. I always wanted to be able to work and earn and do what I wanted to do. My goal in life was to be a private detective, or at least to be a good businessman. But my brother and I didn’t know the first thing about how to be detectives, so we opened a convenience store. Just to go in and hear the cash register opening, even if it wasn’t to put in money, to me that was good. In 1972, I attended a church college, and that spoke to my heart about ministering. I resisted that for a while, but the Bible says the calling of God is without repentance. If God calls, you are never satisfied until you find yourself doing what you feel you are called to do. That’s where I found myself. So I went to church bible school, then I went to Mississippi Baptist Seminary, and in our church they move you around, so I stayed at Mississippi for about twelve years, then Tennessee and Georgia for a while. I’ve been up here for about twenty-seven years.”