“But you’re the one who’s with her twenty-four seven.”
“Ain’t that the truth.” She went to the window. She had a hitch in her step I hadn’t noticed earlier, and I wondered what sort of medical problems she had of her own. Just as I was about to break the silence, she turned with her hand outstretched. “Thank you for coming, Dr. Westphall. You’ve been a big help already. Mother and I will look forward to seeing you again.”
As I was leaving, Hattie stood, paintbrush in hand, and said, “Let’s tulip the lampshade while climbing the cradle.” I made the hospice referral from my car before pulling away from the house. “No rush,” I told the intake nurse. “This could take months.”
Three days later, I received a message from Patricia that Hattie was being admitted to the hospital. She had a fever and didn’t seem able to move her left side. When they’d put a catheter into her bladder, pus drooled into the bag.
“Comfort care,” I told the residents. Comfort care, I wrote in my note.
That night Hattie got three IVs, five medications, a spinal tap, a CAT scan, and a Posey vest restraint. Together, teams of neurologists and radiologists localized the lesion in her brain. She’d had a massive stroke, the result of a clot in the artery that controlled her right side as well as her ability to speak and swallow. When I inquired why my orders had been ignored, the intern said there was no advance directive and her attending didn’t want to withhold care just because the patient was old.
When I called the attending, he said the daughter had told him to do what he thought best.
“But this isn’t what Hattie wants,” I argued.
“There’s no advance directive,” he said. “You can’t know what she wants.” It was a point I had to concede.
I phoned the old Victorian five times that morning and continued calling over the following several days but never reached Patricia. I assumed she was at the hospital or that she’d taken advantage of her mother’s absence to run some errands or go out with her friends. (Carly, the cynic, suggested that maybe Patricia had caller ID and no interest in speaking to me.)
On her fifth day in the hospital, Hattie developed black heels and a chasm around her tailbone. A white cotton cuff looped around her left wrist, which was fixed to the metal bed frame by two long straps tied with bulky knots. Her right arm lay flaccid on the sheet, the hand already beginning to curl in on itself. She couldn’t speak, but she looked my way when I spoke to her in the singsong voice I generally reserve for pets and my youngest grandchildren. Her left arm bucked against its tether, and a feeding tube hung from her right nostril, its other end disappearing down the back of her throat. Every few seconds, the machine beside her bed clicked, and a drop of liquid food, pale and pasty, fell into the clear plastic tubing and made its slow way to her stomach. (I had a similar tube once myself, in medical school; they made us insert them into one another in hopes of teaching both proper technique and appropriate restraint. I gagged repeatedly, the plastic rod an assault on the natural order of what does and does not belong in the human body. I tried to be strong but lasted only seconds. Worse, although I’d skipped breakfast as instructed, after my lab partner pulled out the tube, I heaved into a trash can. And I wasn’t the only one. That night, I told Carly that I’d have to be tied down or drugged to let anyone do that to me again.)
At the end of the week, the intern caring for Hattie left a message on my voice mail. “Ms. Robinson’s rallying,” she said. “Her numbers look good.” Code words for I want her off my service.
We’ve all spoken similar words.
I called back, and the intern said they’d filled out the paperwork for a local nursing home. I told her I only did house calls, but I’d be happy to continue caring for Hattie if her daughter wanted to try taking care of her at home.
I didn’t hear from the intern again and so went on with my life and work, as one must. (“How can you?” Carly sometimes asks lately. To which I answer, “How can I not?” I want to help, and often I do, but my role comes with inherent limitations. What’s more, I see only a sliver of each family’s story, so it’s impossible to judge decisions that might equally be considered selfish or the single available route to legitimate salvation.)
“It’s disgusting,” Carly declared when I told her what had happened to Hattie. We’d driven out to the Mission District to try the latest Nuevo Latino sensation, a Peruvian restaurant that blended traditional flavors and California cuisine.
“I think you mean shameful.”
Carly speared a hunk of halibut from the bowl of ceviche between us and waved it in the air as she spoke. “No, I mean disgusting. What’s shameful is your behavior. Can’t you do something for the poor woman? Isn’t that your duty, if not as a doctor, then at least as a decent human being?”
I spotted a small curl of green chili in the ceviche and avoided it. Spicy foods had begun giving me indigestion.
“I couldn’t reach the daughter. I don’t go to nursing homes any more than I go to San Jose or Afghanistan. What exactly do you think I should be doing?”
Carly raised her eyebrows and lowered her voice. The restaurant had received a bomb in the noise-rating category, so I had to read her lips to understand her.
“Help her. And stop being obnoxious; you know perfectly well what I mean. According to her daughter, her wishes were clear enough.”
I put down my fork. Carly, her hair pulled sleekly back into a perfect bun to show off the dangling diamond earrings I’d bought for her birthday, cut into a small fish laid upon a bed of wilted greens and enormous white corn kernels. I put my hand over hers.
“What if I came home one night and said I’d strangled Hattie? Put a pillow over her head? Injected—”
Carly shook off my hand. “Stop it! I didn’t mean that. You know I didn’t mean that.”
“Is there a difference?”
“There has to be.”
She abandoned the serving spoon and fork. Beside us, a young foursome argued the pros and cons of public and private education.
Carly folded and refolded her napkin. I lifted fish and accoutrements first onto her plate, then onto my own. The restaurant deserved its three stars; the fish melted in my mouth.
“What if it were me?” Carly asked. “If I were like Hattie is? Would you help me?”
For the past couple of years, Carly had had trouble coming up with names of acquaintances and movies we’d seen, little slips that might have been part of normal aging. At first, like many of our friends, we’d made jokes about senior moments. Then my daughter had told me that Carly called our grandson twice the same morning to sing “Happy Birthday,” and a short while later she’d turned the wrong way up a one-way street and didn’t notice until a car came toward her head-on.
I reached for her hand again and held it tight enough that she couldn’t pull away. “Whatever happens, I’ll take care of you.”
Our next course arrived, though Carly hadn’t even begun her fish.
“Poor service,” she said. “I hate that.”
One of the men in the young foursome beside us said, “Then you’ll have to move to Marin or Palo Alto. I mean, if you really believe that’s what’s good for a child.”
“Listen,” I said. “If things get bad—and I’m saying if—I won’t let it get to where Hattie is now. I promise.”
But Carly had been my wife long enough to know this was a promise I might not be able to keep. Prior to the stroke, Hattie hadn’t had so much as a cold in the long years of her dementia.
We looked at each other across the table. Despite the room’s thunderous mix of music and conversation, I had the sensation that I could quite clearly hear my own pulse.
“Eat your dinner,” Carly said finally. “It’s getting cold.”
Seven months after Hattie’s hospitalization, I made an exception to my usual practice and went to the large skilled-nursing facility in the Western Addition, where a patient of mine had been taken temporarily upon the hospitalization of his
wife. Since it was my first visit to the institution about which I’d heard both horror stories and great praise, when the administrator offered me a tour, I accepted.
Hattie sat in a recliner in a large room labeled ACTIVITIES, though the only apparent activity of the many patients parked in two neat rows of wheelchairs and recliners was sleeping.
“The recreational therapist must be on break,” said my guide.
Walking past, I almost didn’t recognize Hattie. She’d gained weight and lost hair, but her left hand gave her away. It wove through the air, fluid and purposeful, as if she were painting a large, invisible canvas. I went over to pay my respects. Standing by her bed, I could smell the sweet liquid now entering her body through a tube that disappeared under her bedcovers and also its inevitable aftermath, pungent and foul in what must have been a full diaper. Greasy hair splattered her forehead, and she wore a faded patient gown imprinted on the chest with the words CALIFORNIA PACIFIC MEDICAL CENTER. Looking around, I saw that they all wore them, though the colors and hospital names varied: ST. LUKE’S HOSPITAL; UCSF; ST. MARY’S MEDICAL CENTER; SAN FRANCISCO GENERAL. A parallel image flashed through my mind: my grandson’s birthday party, where each small boy wore the jersey of his favorite major-league team.
Across the room, my guide looked at his watch. I walked back between the twin rows of patients to rejoin him and resume my tour.
I tried reaching Patricia that evening and discovered that the phone number had been disconnected. The next day, I drove by the old Victorian and saw that it had recently been sold. The following week, though I could more efficiently have phoned or faxed, I made a second trip to the nursing facility to discharge my patient home to his wife. On that visit I didn’t check in with the administrator, just walked around, peering into rooms until I found Hattie’s. (It’s an unspoken truth that a man of my age and race with a stethoscope slung over his shoulder and an authoritative expression has free rein in most medical settings.)
When I said hello to Hattie, she farted. Her left hand swooped, dived, fluttered, and her feeding machine clicked and purred. Unlike the magnificent Victorian house with its art and photographs, the walls and surfaces of Hattie’s current personal space offered no clues about her life. On her bedside table lay a box of blue latex gloves, size small, and a cheap black barbershop comb. I used the comb to move the hair off her face and neck. She blinked once—a reflex—then kept painting the air. After just three passes of the comb through her hair, flakes of skin covered the black plastic like pox. I looked around but found myself the only fully sentient and still-functional person in the room. Hattie’s roommate’s eyes were open but staring into some space to which I didn’t have access.
I pulled the curtain around Hattie’s bed, opened my work-bag, and from the forest of syringe-and tourniquet- and swab-filled plastic bags, selected the one I’d packed that morning with Hattie in mind. Donning gloves, I poured the liquid into one palm and then rubbed the waterless shampoo into Hattie’s scalp. She leaned into my hands like a kitten. With her hair returned to a thin but lustrous white, I washed her face, applied Carly’s moisture cream to her cheeks and forehead, and put Vaseline on her lips. I hadn’t asked to borrow Carly’s cream but felt sure she wouldn’t mind.
Before leaving, I placed the toiletries on Hattie’s bedside table, took a business card out of my pocket, and circled my phone number. Then I wrote “call anytime” beside my name and propped the card against the box of latex gloves. At the hallway door I turned and, with a glance at Hattie, fingered the loaded syringe in my jacket pocket. It was a flu shot for my other patient, but it might have been anything.
A Medical Story
So much of medicine is stories. Or potential stories. For example: the year before I began doing palliative care, I visited an elderly couple in an apartment complex named for Martin Luther King. Rogelio said that was the only good thing about the place. Beer bottles and cigarette butts ornamented the sidewalk; urine and streaks of barely clotted blood garnished the walls. A woman reeking of dust and sweat reached for my jacket and stumbled, smearing saliva on my sleeve. The guard checked me over, then buzzed me in, showed me where to sign, told me to take the elevator, not the stairs. The elevator wobbled and creaked. On its walls were faded admonitions about garbage disposal and the use of fire escapes printed in English, Spanish, Chinese, Russian, and Tagalog. Rogelio and Carina lived on the fifth floor, in the last apartment along a narrow, windowless corridor. Someone had obliterated the hallway lights. I turned on my otoscope and held it in front of me to light my way. It helped just enough.
By the time I finished my eight years of medical training—the year I met Rogelio and Carina—I had abandoned the midwestern friends of my childhood, the mountain biking I’d taken up with such enthusiasm upon moving to San Francisco, the ability to sustain a romantic relationship, and any reading that artfully conjured the pain of others or took longer than half an hour to complete. By way of trade, I had acquired expertise in internal medicine, a twenty-pound diabetic cat with a fondness for sushi, and a spacious apartment on Russian Hill from which I could walk to Chinatown, North Beach, and Fort Mason. Still unsure of what I wanted from my career, I signed up for a year of locum tenens, filling in for doctors on vacation or family leave, moving from one clinic or hospital to another every few weeks or months, and sometimes juggling more than one job at a time in hopes of paying off my student loans before I turned forty.
Very quickly, stories of lives damaged, unnoticed, and discounted accumulated in my imagination. I could neither forget nor make sense of them, so I began taking notes and then signed up for a writing class online in hopes of capturing and better understanding my work and my patients’ lives. The class reminded me of the person I’d been before my medical training—a happy, caring person I liked and hoped to become again—but the time I devoted to writing was time not spent reading medicine or making money. I began to wonder what counted as meaningful work and, by extension, as a meaningful life. I didn’t see that those questions linked my writing to medicine as surely as did my subject, each story the tale of a patient or doctor I knew or had heard about.
So many medical stories are about death, or potential death. From the fifth floor of the Martin Luther King apartments, where I occasionally visited them as part of an outreach team for an understaffed neighborhood health center, Rogelio watched helplessly as his wife disappeared. He was a tiny man, so frail that once, when I passed him with only a foot of space between us, he wobbled, clutching his walker as if it were the safety bar on a roller coaster. His wife, Carina, sat smiling and mute in a wheelchair, fat and healthy except for her brain, a not so vital organ if you have the right husband.
Each visit was the same. Rogelio wouldn’t discuss any of his many worrisome diagnoses, just his guess about how much longer their luck would last. And he wouldn’t consider a nursing home. With a nod at the caregiver, he’d say, “I must watch them with her.” And, “I am so lonely.”
The aide sat beside her charge, engrossed in a soap opera. Carina smiled. When I left, Rogelio squeezed my arm and whispered, “She must die first. Promise me.”
Young and hung up on mistaken if well-intentioned notions of professional integrity, I made no promises.
Medical training had done something to my attention span. In high school and college, I had kept journals and turned out five- to fifteen-page essays on a biweekly basis. During residency, I had worked eighty-hour weeks and thought nothing of it. Having finished my training, I wanted nine hours of sleep a night, weekends off, and another human being with whom to share those large swaths of unstructured time. Though I aspired to write articles that told a moving story, then explained how the world needed to change so that, for example, people like Rogelio and Carina would be better cared for and safer, I couldn’t seem to generate more than a paragraph at a time. Worse, more often than not, I produced writing best described as minimalist, sardonic, and self-referential.
One of the earliest pieces I
wrote was called “Guilt,” and it was a one-liner:
If she spent half as much time working as she did feeling guilty about not working enough, she wouldn’t have to feel so guilty.
The night I finished that piece, I invited over a man who’d had a crush on me for years. He was a friend of a friend who’d landed in San Francisco shortly after I did and bicycle commuted sixty miles a day to and from the Redwood City children’s video game start-up, where he worked as creative director. When he arrived, I went into the kitchen to pour us some wine, and when I returned to the living room, he was holding my story.
“What’s this?” he asked.
“An essay.”
“It’s a good start.”
“It’s done.”
He sat on the couch, downed half his wine, and read the piece again.
“I get it,” he said finally. “It’s like one of those witty, paradigmatic, semiautobiographical thirty-page essays reduced to a single sentence?”
I kissed him. That night, we began dating.
Doctors, you see, aren’t so different from patients. Every day we hope someone will see past our elaborate and very impressive window display to the jumble of expired products weighing down the shelves and choking the aisles of our psyches.
This is a classic medical story: It was three in the morning. I was covering the night shift at a small Catholic hospital when I was called to see a patient seven hours dead and zipped into a white plastic pouch brought back up from the morgue. He had been dying for so long—first at home and, more recently, in the hospital—that no one had bothered to call a doctor when his heart stopped. Legally, he was still alive.
The nurses and aides—two Filipinas and a plus-size Barbadian with a strong, charming accent—wouldn’t go into the room. They clustered, nervous and giggling, just outside the door, speaking of spirits and ghosts. The room was all dim lights and long shadows, the body bag glowing as I pulled at the long central zipper, then parted the plastic edges. I placed my stethoscope on the patient’s cold chest, and it teetered on his ribs. I thought, As if nurses don’t know death. As if the diagnosis couldn’t have been made by the tech in the morgue.
A History of the Present Illness Page 19