“Well, it looks like the board of supervisors agrees with you, Victoria. Because it accepted Dr. Stein’s report, and a bond measure is going on the ballot. But no one thinks it will pass.”
“Anything else going on?”
“Well, Dr. Romero doesn’t like being medical director much, and she’s decided to come back to the admitting ward. But we’re not. I guess it’s been hard on her. It’s been frantic here, actually. The DOJ came back thirteen times. So she’s hired a new doctor, and just the two of them will be on the admitting ward.”
“But what about us?”
“I don’t know. I’ve heard we’ll be taking over three of the long-term wards—a hundred patients between us. I don’t know whether I can do that, Victoria. I’m thinking perhaps I’ll retire.”
That was sobering. Though interesting, I reflected, after I hung up. I would miss the admitting ward, for sure. And I did have an alternative. Dr. Hoefer had offered me a position as professor adjoint in the Department of Community Medicine. He was fine with my part-time practice and he liked my medieval research, and it would satisfy my ambition of living by that lake in Switzerland, writing in the morning and seeing patients in the afternoon.
But I missed my home, and I missed my hospital. I wanted to see what was going to happen; how it would all turn out.
So right on schedule, I returned.
It was early in the morning when I parked in my usual space downstairs by the pigeons and the smokers who had, in my absence, been exiled outside. Laguna Honda was just as shabby-elegant as ever, I saw—peach-colored paint peeling from its walls and red-tiled roof. I went inside and up the stairs. But before I went into the medical director’s office to get my new assignment, I took a stroll under the statue of Saint Francis and over to the admitting ward. Its double doors were, for the first time, closed, and a new sign was up on the wall next to them, in pink with a little pink heart: WELCOME TO THE ADMITTING WARD!
I walked over to the hall where the smokers used to congregate. It was empty, though the vending machines, tables, and floor-to-ceiling windows were still there. I stood for a while and just looked. Then I turned and started walking back to the medical director’s office when I heard a voice.
“Is that you, Dr. S.?”
I looked around. I didn’t see anyone. “Who said that?”
“Is that you?”
Then I noticed, in the corner of the hall, a wheelchair. And in the wheelchair, twisted and tiny, a patient I hardly remembered, a patient of Dr. Fintner’s. I’d never paid him much attention. He was one of our developmentally disabled patients—blind from birth, twisted from birth, and, I’d always assumed, retarded from birth. How had he recognized me? How had he remembered me? After a year? Blind?
“Yes, it’s Dr. S. How did you know it was me?” I asked.
“You’ve been gone a long time, haven’t you, Dr. S.?”
“Yes. A whole year. But how did you know it was me?”
“Oh … I could tell it was you by your walk. You’ve been gone a long time.”
“Yes. I have.”
Then he smiled at me, and I smiled back and hoped he could hear my smile—who knows? But he was how I knew—I was back.
It was the first time I’d understood that I was not only in the audience at the hospital but on the stage, too. Of course, I’d always known I was an actor in the life of my patients, but I hadn’t realized that my features, mannerisms, walk were scrutinized as much by my patients as theirs were by me; that as much as I examined them, they examined me and reached their own conclusions. Although why I hadn’t realized what a stage it was—that spacious place with its wide windows, great hallways, and open wards—I don’t know. It would be one of the big lessons in this next act of my time at Laguna Honda.
Then I walked down the hallway and went over to the medical director’s office.
Seven
DANCING TO THE TUNE OF GLENN MILLER
THERE WAS NO MEDICAL DIRECTOR in the medical director’s office, not yet and not for many months, but it didn’t matter much because there was Jerrie.
Jerrie was the secretary for the medical department, which consisted not only of doctors, psychiatrists, and psychologists, but also of the radiology department, the laboratory, social work, and rehabilitation. And Jerrie was the linchpin of the whole thing. She knew just about everyone in the hospital, and she always knew exactly what was going on. Her office was between Dr. Major’s office and Miss Lester’s, so she was even closer to the incoming and outgoing ambulance drivers than Miss Lester had been. Except at four PM, when the tide of nurses at change of shift surged past, her door was always open. Since Jerrie’s desk faced the door, it was her smiling, amused face that met me on my first morning back.
“Well, well. Dr. S …. at last. Welcome back! And how was Switzerland?”
Hers was a small office, but it was gossip central, curbside-consult central, spontaneous-meeting central, and therapy central. Not just for the doctors but for everyone, even the patients. In fact, Jerrie had her own collection of patients—schizophrenic, brain-injured, demented, developmentally delayed, and often all four—who visited her daily.
For instance, Mr. Stuart Bayou was one of her patients. I’d admitted him years before. He was a grown man and virile, with a heavy five-o’clock shadow no matter how well the nurses shaved him, dark brown hair that the nurses combed over his balding pate, a strong jaw, straight nose, and full mouth. But because of a hip fracture that had knit poorly, he was confined to a wheelchair. He was confined also by a brain that had stopped maturing when he was five years old. So Mr. Bayou couldn’t read or write, and, despite his athletic 180-pound frame and masculine habitus, he was still a five-year-old, with obsessions and even tantrums. But he did like the Beatles and could always be calmed by a positive response to his request: “Write me the Beatles. Write me the Beatles. Write me the Beatles.”
He turned up almost every afternoon at Jerrie’s office. She had paper and crayons ready, and every afternoon she wrote out THE BEATLES for Mr. Bayou over and over again on a piece of paper. She would hand it to him, and Mr. Bayou would scan it as if trying to figure out its magic meaning, then take it gratefully and put it away with his other papers and the magazines he’d lifted from the library. Then he would wheel off to visit someone else.
Jerrie was large though not fat, and a warm medium brown, with a lot of Native American and North African in her face. Her features were straight, her eyes golden brown, and her temperament cheerful but ironic, the sine qua non of her position. It was she who gave me my new schedule that day and explained the chess moves that had occurred in my absence. She confirmed Dr. Fintner’s report: Dr. Romero and a new doctor, Dr. Dan Stanislaus, were now the admitting team for the admitting ward. Dr. Jeffers had moved to Clarendon Hall, and Dr. Fintner and I would share three wards, totaling 102 patients. I would have E4, a complex medical ward with rehabilitation patients; Dr. Fintner would have D5, also a complex medical ward, and we would share E6, a dementia ward.
I might want to get myself to my new wards and begin getting to know my new patients, Jerrie suggested, even though Dr. Fintner had not yet arrived.
I sighed. I loved the minihospital that the admitting ward was—the unpredictability of each day, the patients who came and so often went. It had suited me well. These new wards would be difficult, especially the dementia ward, the classic back ward of a state hospital. I thought about the HUG and the position I’d turned down, and then I started up the stairs for E6.
E6 looked almost exactly like the admitting ward except that it had been built during the Depression and had a narrower entrance and dimmer lighting. Otherwise its setup was the same. At the entrance, a few private rooms, a little kitchen, a cozy staff room, a linen room, a nursing station, and then the wide, open ward. Thirty-four beds lined the walls of the ward, each next to a window; at the far end, taking the place of the medieval chapel, was the solarium. Being one floor above the admitting ward, E6 had an even
more beautiful, though more distant, view over the city to the ocean.
Dr. Kalma, the former doctor of E6, had left me with a good ward, a straightened-out ward. He’d completed everything: the annual physical examinations, the monthly orders, the flu shots, the advance life directives. He didn’t give me his set of index cards though—doctors didn’t carry them anymore. Nor did he wait to walk me around the ward as Dr. Judd had done on my first day. But he didn’t need to, because I would have plenty of time to learn about the patients all by myself.
Now E6 was part of the “dementia cluster,” and this idea, of clustering patients with the same diagnosis together on one ward, was one of Ellen Mary’s innovations. Before, patients had been assigned to a ward not on the basis of their medical diagnosis, but on some other basis, not always easy to guess—gender, nursing needs, and the mood, connections, and seniority of the head nurse. There were, after all, difficult patients and easy patients, satisfying patients and frustrating patients. And, since many patients stayed a long time and the head nurses even longer, over the years each ward evolved quite individually. Each had a reputation—of being good or bad, pleasant or not, for patients, staff, and head nurses.
Surprisingly, though, despite this individuality and the struggle of the head nurse for a manageable ward, each ward ended up with a near-identical mix of patients, as far as medical acuity and nursing needs went. Each ward had a few difficult patients, a few easy patients, some medically complex patients, some demented patients, and some little old ladies or little old men. This variety had had its advantages. It had been good for the nurses because it lent variability to their day and equalized the difficulty of their jobs across the hospital. It had been good for the doctors because it kept us on our toes medically. And it had been good for the patients because the disabilities in any particular ward were complementary—the physically disabled watching out for the demented; the lame leading the blind, in fact.
But that system was not the modern system, which was to cluster patients by their diagnosis. So as soon as Miss Lester retired, Ellen Mary Flanders reorganized the patients into new “diagnostic” clusters: the “complex medical cluster” for patients who were terribly but chronically ill; the “psychosocial cluster” for patients who were mentally as well as medically ill; the “chronic cluster” for the tiny ladies with nothing wrong with them except for Father Time. And there was the “dementia cluster.” Each of the “dementia cluster” wards corresponded to a different stage of dementia: the stage when the patient forgets where he is and starts to wander; the next stage, when the patient forgets how to talk; and the last stage, when the patient forgets how to eat.
My new ward, E6, was one of the dementia wards.
Although it was a dementia ward, it was not an Alzheimer’s ward, at least not according to the 1907 description of his disease by Dr. Alois Alzheimer. Today the diagnosis of Alzheimer’s is practically synonymous with dementia, but that usage is often not accurate.
The word dementia comes from the Latin word mens, meaning mind;and to be “demented” signifies a kind of “de-minding,” the gradual loss of intellectual functions—especially of memory, with its power for learning and planning. Premodern medicine usually called it amentia—that is, mind loss—and never could settle on whether aging alone caused it. For instance, the writer Cicero, who lived to be eighty-five, thought that dementia could be prevented by exercise, while Galen, the most famous physician of Rome, thought it was inevitable because of the cooling and drying of the body that naturally occurred over time. Which was how he understood old age: the warm, wet body of the infant gradually losing its warmth and moisture to end up as the dry, cold body of the elderly. This explained why the skin of the old was dry, the eyes dry, and the frame shrunken. The brain, according to Galen, also cooled and dried. And just as dried clay could no longer accept new impressions, so, too, the aged brain could no longer accept new impressions, which was why the elderly had trouble remembering. Galen did think that dementia could be delayed, however, by a regime that warmed and moistened the body, and Hildegard, who followed his teachings, did recommend just such warming and moistening herbs for dementia.
Our modern understanding of dementia is relatively new. It was first formulated in the early 1800s by Dr. Philippe Pinel of the Salpêtrière hospital in Paris. The Salpêtrière was an enormous chronic care hospital not unlike Laguna Honda, and over the years he practiced there, Dr. Pinel became fascinated by a group of patients for whom, as Henry Maudsley later put it, “the memory was impaired, the feelings quenched, and the intelligence enfeebled or extinct.” Pinel named this condition démence—dementia. He made sure to autopsy the brains of his demented patients after they died and he was able to correlate their clinical course with what he found, generating a long list of causes for démence. His protégé, Jean-Étienne Dominique Esquirol, continued to study dementia and published his results in his 1838 Des Maladies Mentales. In it, he defined dementia as a “weakening of the sensibility, understanding, and will …. Incoherence of ideas, and a want of intellectual and moral spontaneity are the signs of this affection.” He, too, correlated his patients’ clinical courses with what he found at autopsy and concluded that dementia had many different causes, including: “strokes, head trauma, syphilis, mercury poisoning [for treating syphilis!], alcoholism, errors of regime, and trials, disappointments, and privation.” What Esquirol did not describe, however, was what we know today as Alzheimer’s. That would take another century and the formulation of new ways of staining brain cells.
In 1907 Dr. Alois Alzheimer published his case of Auguste D, a fifty-one-year-old woman who had had an unusual, rapidly progressive dementia. After she died, he did an autopsy, and he prepared her brain with silver stain. Then when he examined the brain cells under his microscope, he saw that they were filled with thick black tangles, which he called “neurofibrillary tangles.” Outside the cells he saw thick white plaques—“extracellular plaques.” These tangles and plaques, he proposed, must have been the cause of her unusual dementia, and a few years later, his discovery was named after him.
For many decades after its description, Alzheimer’s disease was a very rare cause of dementia because of the way Dr. Alzheimer had defined it. Alzheimer’s dementia had to be a “presenile” dementia—that is, it had to have started in middle age, and this was rare. The patient’s brain had to show neurofibrillary tangles and extracellular plaques, and this meant that a biopsy or autopsy had to have been done, which was also rare.
But then, in the 1970s, there was a research push to understand the dementia of old age, and when silver stains were applied to elderly demented brains, many showed neurofibrillary tangles and extracellular plaques. Scientists, therefore, concluded that Alzheimer’s disease was not a rare but a common cause of dementia in the elderly, and money began to flow into researching the reason for these tangles and plaques.
There was a problem, however. In order for scientists to do research on Alzheimer’s disease, there had to be a way of identifying which demented patients had those tangles and plaques. Yet, except for a brain biopsy or an autopsy, there was no way of determining that—no blood test or X-ray. So in the 1980s a crucial redefinition was made. Instead of continuing to use Alzheimer’s original definition of a presenile dementia with neurofibrillary tangles and extracellular plaques, a new definition of Alzheimer’s was put in place: it was any dementia without another known cause. This was a huge change since it meant that the diagnosis of Alzheimer’s depended, not on a brain biopsy or on an autopsy, but on doctors excluding all other causes of dementia—in theory, the whole list that Esquirol and others had developed over the preceding hundred years.
At first doctors were careful to look for other causes of dementia before they made the diagnosis of Alzheimer’s. But as time went on, and the management of health care became tighter, demented patients stopped getting this full dementia workup. It was easier, faster, and cheaper to just assume that a demented elderly patient ha
d Alzheimer’s, which was so common anyway.
And what was wrong with that? What was wrong with changing the definition but keeping the old name if we all agreed on the new definition?
What was wrong was that in the past Alzheimer’s had been defined as a rapidly progressive, presenile dementia with neurofibrillary tangles and extracellular plaques. And that meant that the diagnosis of Alzheimer’s implied a course and a prognosis: It was rapidly progressive and relentless. But if, instead, Alzheimer’s meant any dementia for which we can’t find a cause, then this prognosis might be inaccurate, and patients and families would make incorrect decisions about future care, inheritances, and wills.
Even worse, all the past research on Alzheimer’s had concentrated on those neurofibrillary tangles and extracellular plaques, and Alzheimer medications had been developed for them specifically. If they were given instead to a patient whose dementia had nothing to do with neurofibrillary tangles and extracellular plaques, then they wouldn’t be effective. A patient would get all the side effects but no improvement. That is what was wrong with redefining Alzheimer’s dementia as any dementia with no other known cause. On the admitting ward, I’d already seen many patients who had the diagnosis of Alzheimer’s but, in fact, turned out to have a different cause for their dementia—and sometimes a treatable cause, such as B12 deficiency, AIDS, depression, or a thyroid disorder. With the correct diagnosis and the corresponding treatment, many of these “Alzheimer” patients improved, sometimes enough to go home.
On E6, too, none of its thirty-four patients had Alzheimer’s, as I would gradually realize when I got to know them, although many had that diagnosis in their charts. Instead, each one had some other cause for their dementia—and usually many causes.
There was Mr. Essem, for instance. He was my youngest patient on E6.
God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine Page 17