The three of us split three ways to corral him before he ran down the hill and out onto the busy street. At the same time, our institutional police—big and slow-moving but unstoppable—showed up, and the four of us moved in on Mr. X., who looked around and made a dash down the hill. But the police had stationed someone there, too, and the five of us tightened our circle until Mr. X. was trapped. He looked around one last time, took a deep breath, and dropped his shoulders. The police surrounded him, and with the situation under control, Dr. Jeffers and I walked back to the doctors’ office.
“What’s the story?” I asked.
“Well,” Dr. Jeffers began, with his drawl, looking over at me as we walked, “it’s a sad one. David and his brother, Steve, both have Huntington’s disease, and their mother has been taking care of them. They’ve gotten much worse, demented but still strong, and she can’t manage them anymore. They’ve run away from the house, showed up in neighbors’ beds, and fought with her. So a few months ago she brought Steve in, and we were hoping to put David on the same ward. Easier for their mother and better for both of them. But we can’t manage that,” he finished, as we sat down in our office. “He’s too much for us these days, after the DOJ and the budget cuts. We don’t have the staff, anymore. I’m calling the County. They’re going to have to take him back until he agrees to stay here.”
Huntington’s disease is a good example of the miracles of modern medicine. An incurable brain disease, it is inherited in an autosomal dominant fashion, which means that if one parent has it, a child has a 50 percent chance of getting it. In David’s family both his father and his grandfather had died of it. It destroys the brain in a characteristic way: first the areas of judgment, then those of perception, last of strength and vigor. It also destroys the part of the brain that modulates movement, so the movements of patients with Huntington’s disease are the jerky, dancing movements I’d seen in him.
What makes the disease especially cruel and ironic is that it does not appear until middle age, and until a few years ago, there was no way to tell whether you had escaped the family curse or not. So family members went ahead and had a family of their own, and thus the disease was passed on. Then a predictive blood test was discovered, and now the irony has changed. One wants to know, of course, that one is free of a hereditable, dementing, and incurable disease, but one wants not to know that one has it. So taking that test is a kind of test of moral strength. It became available, however, only after the Gutierrez brothers—and David and Steve had been unlucky—scored 100 percent in the Huntington’s disease lottery.
Before Dee and Tee and the DOJ, we would have tried to manage David at Laguna Honda, as Dr. Jeffers said. The head nurse would have placed him nearest her observation window and kept a full-time eye on him. We would have used vest restraints and tranquilizers to decrease the chance of his running off again; and if he did escape now and then, well, that was to be expected. But we no longer had the head nurses, with their extra time to knit and to watch; the use of vest restraints and tranquilizers was frowned upon; and the DOJ had little tolerance for even an occasional escape.
So Dr. Jeffers had to call the County Hospital and send David back for a long, unnecessary hospitalization. David could return to Laguna Honda, Dr. Jeffers told the County doctors, but only after his disease had progressed to the point where he was confined to his bed—self-restrained, as it were, by his encephalopathy.
That was the first admission of the day.
The second admission was mine, and it would be Mrs. Klara Muller, who was coming in from home. I looked over her records before she arrived, which were scanty but informative enough. What they told me was that Mrs. Muller, age seventy-eight, just couldn’t manage anymore.
Until eight months before, she’d been doing fine. Fine meant managing her house and taking care of her forty-year-old retarded daughter. She was healthy and led a pretty ordinary life for a widow her age—playing cards, running errands, doing lunch in the little corner of the city where she lived. But then she fell and broke her hip.
Now, the treatment of hip fractures is another of the wonders of our modern medical system. Thirty years ago a hip fracture often meant the end. The surgery to fix a hip was time-consuming and followed by a long convalescence in bed, with many potential complications—blood clots to the lung; bedsores; pneumonia; loss of job, house, social position; boredom; depression; and expense. Nowadays a hip fracture means a forty-five-minute surgery, a few days in the hospital, and a new hip.
Which is what Mrs. Muller received. She fell and broke her hip; 911 was called; and the ambulance took her to the Best Hospital in the City. She had surgery the same day: The ball of her hip was excised and replaced with a titanium ball. She was given a wonder drug to prevent blood clots, and then, so as to prevent bedsores, depression, and boredom, she was encouraged to get up and start walking right away.
There were, however, a few unexpected complications.
First, Mrs. Muller became delirious after surgery. When her workup showed no acute medical problems, her doctors ascribed her delirium to a psychosis from undiagnosed Alzheimer’s disease, and they started her on an antipsychotic medication. Also she was found to have diabetes, and it was difficult to control, with many highs and lows in her sugar levels. Then, even though she recovered physically from her surgery, she remained confused in spite of the antipsychotic medication, though now she was quiet and withdrawn. She was so confused that she couldn’t learn to manage her new diagnosis of diabetes or give herself the daily injections to prevent blood clots or take her pain medications correctly.
Her doctors couldn’t imagine how she would take care of her adult retarded daughter or her house; nevertheless, they agreed with the utilization reviewer that it would be better for Mrs. Muller to be at home than in the hospital. Better for the hospital, because it had already been paid whatever it was going to get for Mrs. Muller’s hip fracture; it wouldn’t receive any additional payment no matter how long she stayed. It would be better for Mrs. Muller, too. She would avoid the unusual germs that thrive in the hospital; home would be familiar; and perhaps her confusion would clear. It would be better for her daughter also. And it would be better for the health-care system. Because no matter how expensive it was to arrange for a visiting nurse to give her injections, pain medications, and check her sugars; for physical therapists to go to her home to exercise her hip; for home-care workers to help with the housework; for Meals on Wheels; a caseworker to manage the services; and a social worker, it was still less expensive than keeping Mrs. Muller in the acute hospital.
So it was all arranged, and Mrs. Muller went home.
Her discharge worked like clockwork. Every day the physical therapist came to the house to exercise her new hip. The visiting nurse gave her the necessary pain medications, checked her sugars, administered insulin, and even tried to teach her daughter to give the injections. Meals were delivered twice a day. The home-care workers came every day, too, and straightened the house, prepared her daughter for school, dressed Mrs. Muller, put her into her wheelchair, and returned in the evening to do it all in reverse.
Except that Mrs. Muller did not get better. Or so the social worker told me when I called about Mrs. Muller, who, in the meantime, had arrived. She did not improve. Her hip continued to hurt despite the narcotic pain medications she was getting, and they had to be increased. More and more often she refused to get out of bed; she wouldn’t get into her wheelchair; and she wouldn’t walk. Finally the physical therapist stopped going to the house. The diabetes was better because she wasn’t eating much, but her dementia was the same or worse. Mrs. Muller lay in bed all day, and if she spoke at all, it was to ask for more pain medication.
So, the social worker told me, they’d finally given up. Mrs. Muller had failed their best efforts to keep her at home. She needed to be cared for in an institution, and with her complicated medical problems and on her widow’s budget, Laguna Honda was the best place for her. As for her daughter, sh
e would have to be placed somewhere, too.
I thanked the social worker and then left the doctors’ office to find Mrs. Muller. I was looking for a frail, white-haired old lady, lying in bed, withdrawn and quiet, who would mumble in response to my questions. I found her, and she was white-haired; she was lying in bed with her eyes closed, and she did look feeble and weak.
But when I greeted her with “Good afternoon,” Mrs. Muller surprised me. Though her voice was soft, she said “Good afternoon” back in a lilting Austrian accent. Not only that, she looked at me from the bed, and her blue eyes were cagier and more wary than her diagnoses allowed. She knew her name and where she was; she knew the date; and she knew what was wrong with her. She couldn’t walk, she told me clearly, though wearily, drowsily, and druggedly, because her hip hurt.
When I examined her, I couldn’t find any of the subtle signs of diabetes, which was a little surprising. Her hip also surprised me. The surgical incision was healed, but when I checked the hip’s range of movement, Mrs. Muller winced. This was unusual six months after a hip replacement. So as soon as I finished my exam, I sent her upstairs for an X-ray, and a few minutes later I ran up to take a look. The X-ray was not normal. Mrs. Muller’s titanium hip was dislocated out of its socket and had done so months before. No wonder she couldn’t walk.
I went back down to the office, called her surgeon, and told him about the X-ray. And to his credit, of all the doctors and surgeons I ever called about a missed diagnosis, he was the most embarrassed and apologetic. He offered to come over and examine the hip himself. After he realized that wasn’t necessary, he volunteered to arrange remedial surgery for her at the Best Hospital in the City the next day. Which he did.
Mrs. Muller had her surgery without a problem, and three days later she came back, artificial hip now in its socket. She seemed about the same—quiet, still in bed, and still in pain—and yet different. Chronic pain, which is what the dislocated hip had caused her, is mysterious and debilitating, while postsurgical pain is expected, localized, and, above all, temporary; and Mrs. Muller had exchanged the one for the other. Her face had relaxed, her brow had unknit, and now I could appreciate that she was a pretty woman.
It’s rare to be elderly and pretty. I’ve had only a few women patients and even fewer men who in their old age were beautiful or handsome, and they must have been extremely beautiful or handsome when they were young. Most of my patients did have something—a smile, a lift to their head, a flash in their eyes—that distinguished them, and the badder they were, the more attractive. But Mrs. Muller was just plain pretty. Her hair was white and thick; her eyes, lake blue; her skin, protected from the sun all her years, was almost unwrinkled, clear and milky.
Nothing else was different. Her medications were the same, and she was still weak, withdrawn, and drowsy.
Over the next few weeks the new incision healed, and Mrs. Muller’s hip pain disappeared. Since she no longer needed pain medications, I discontinued them. With that, her mood brightened, her voice cleared, and she seemed stronger.
Then the nurses began moving her into a chair every morning, and when I made my rounds, I sat on her bed and practiced my German. She told me about her Austrian village, her arrival in America, and about the little neighborhood in the city that she and her husband had discovered. A few streets, but very Austrian. I would like it, she said. There I could find German books and magazines, German music and candy, bread, sausage, and cookies in the little store; there was an Austrian tailor; and I could even get a good German meal and good German beer in the restaurant on the corner. I should be sure to visit.
After a few more weeks, I began to wonder if Mrs. Muller really was demented and psychotic. She didn’t seem demented. Her eyes were observant; sitting in her chair, she noted everything that was happening on the ward; and she could report on patients’ and nurses’ activities from the evening before. Nor did she seem psychotic. She didn’t hallucinate; she had no delusions; she wasn’t fearful, not even at dusk, when the paranoia of Alzheimer’s increases. True, she was still on medications that would mask those symptoms, but they work only so well. It is usually possible to see a suppressed psychosis behind them. But Mrs. Muller was quite lively, quite sharp. It seemed worthwhile to try taking her off her antipsychotic medications.
So I did, over the next several weeks. This takes time because antipsychotic tranquilizers can last in the body for a long while. Patients can do well at first and then, weeks after their last pill, become irritable, then delusional, and then begin complaining that the nurses are poisoning them. But Mrs. Muller did well without them. It was a pleasure to watch. Her personality increased in proportion to the decrease in those medications; like a photograph developing, her self became more colorful and more definite with each day.
About three months after she arrived, she asked me if she could go to physical therapy and learn to walk again. She worked hard in therapy, and soon she was getting around the open ward with a walker and then with a cane. I began to wonder if she might even get home, although there was still the diabetes, the insulin, and the daughter.
I knew she could learn to give her own insulin, but on her first physical examination I hadn’t seen signs of long-term diabetes—no nerve changes, no eye changes. What’s more, in her three months on the admitting ward, her sugar tests had been normal. It seemed worthwhile to try to taper her off the insulin, and see what would happen.
Nothing happened. She was fine without the insulin. She didn’t have diabetes.
How had she gotten the diagnosis? Hard to say. Perhaps during her first admission to the Best Hospital, a latent glucose intolerance was precipitated under stress. Or perhaps an intern had overinterpreted some lab values; or perhaps the diabetes diagnosis was simply a mistake, magnified by episodes of low blood sugar treated with intravenous glucose.
In any case, with her hip fixed, Mrs. Muller could walk without pain; without pain medication, she was no longer confused; without the antipsychotic medication for her confusion she was no longer lethargic; and without the diabetes diagnosis, she could go home.
We began to arrange her discharge. Her social worker was delighted to hear that Mrs. Muller was going home and wouldn’t need visiting nurses to help with her medications, home-care workers to help with her house, physical therapists for walking, or a caretaker for her daughter. So six months after her admission, Mrs. Muller was discharged to her flat, her daughter, and her little piece of Austria in our city.
What struck me most about the case of Mrs. Muller was how much money I’d saved the health-care system and how little effort that had taken. It hadn’t been a difficult diagnosis to make. Just about any doctor at Laguna Honda would have taken that X-ray eventually and made the diagnosis of a dislocated artificial hip.
Then why hadn’t anyone else done that in the six months she’d been bedridden? I don’t know, but I can guess. The visiting physical therapist let Mrs. Muller’s doctor know that she wasn’t improving, but there her responsibility ended. The visiting nurse, who was at the house to take care of her diabetes, did so. The home-care aides did their home care, and the social worker, her social work. It wasn’t anyone’s responsibility to put it all together.
What about her doctor? Didn’t she have a doctor, and shouldn’t the doctor have made the diagnosis?
I don’t know as Mrs. Muller did. Bedridden upstairs in a flat, she may not have seen a physician during those six months. She hadn’t seen her surgeon. He’d received reports from the visiting nurse and physical therapist, but he told me that he hadn’t thought to have Mrs. Muller come in for an examination. It was just too difficult. At Laguna Honda, by contrast, it was easy to examine her and get an X-ray, and once the X-ray was done, easy to run upstairs and look at it myself.
Most of the doctors at Laguna Honda would also have stopped Mrs. Muller’s pain medications once she was no longer in pain. We had a kind of corporate culture about that. Outside the hospital it was different. I’d admitted many patient
s whose pain medications had never been discontinued even though their pain had resolved. Why not? Inertia, but also the difficulty of assessing a patient during those short, infrequent outpatient visits. Safer not to rock the boat by taking a medication away from a stable patient.
Fewer of the physicians at Laguna Honda would have tapered her off the antipsychotic, but many would have. We had the luxury of time, after all; of twenty-four-hour observation, so that the risk of Mrs. Muller becoming psychotic as her medications were decreased was acceptable; we would notice if she started to get confused.
Many fewer doctors would have stopped her insulin, diabetes being a diagnosis that is hard to shake off once you have it. Still, with almost any physician at Laguna Honda, Mrs. Muller would have gone home. Because that was the nature of the place—with its open wards where patients could be monitored by observant if unsophisticated nurses; with staff physicians who could see the patient every day and notice changes; with an X-ray machine upstairs.
As I watched Mrs. Muller get into her car, I thought about the money that Laguna Honda’s Slow Medicine had saved the health-care system. I was beginning to think of it as just that—as Slow Medicine, in the same way that there was Fast Food and there was Slow Food.
I was thinking about it especially because we were in the middle of yet another budget crisis, and administration was sending us memos about cost containment. We should pay attention to the costs of what we did, administration advised. Perhaps we could avoid prescribing the newest medicine if an older, cheaper one would do; shelve expensive tests if they had no clinical repercussions; order vans instead of ambulances; or reconsider routine lab tests. Administration presented its suggestions as if doctors had to be convinced to watch out for costs, and some doctors do take such suggestions as evidence for a capitalist invasion of the health-care enterprise. Yet the real problem, Mrs. Muller showed me, was that administration’s thinking did not go far enough; it did not cast a wide enough net and did not snare the real culprits.
God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine Page 13