Slow Medicine: The Way to Healing
I didn’t know how bad it was until my own father was in the hospital.
It began on Friday afternoon of the week before Thanksgiving, not the best time to get sick. Even hospitals and doctors have a kind of schedule, and Friday afternoons are when we like to straighten things up for the weekend. My father came back from lunch at a restaurant with my mother, lay down for a rest, and then she observed him having a seizure.
This wasn’t new. He’d had a few grand mal seizures over the years and was supposed to be taking seizure medication, but sometimes did not. And though my mother had seen him have seizures before, she was terrified; seizures are terrifying, though mostly they don’t hurt you.
She called 911, the paramedics brought him to the lovely community hospital five blocks from their house, he was examined and admitted.
That surprised me. Where I usually practice medicine, in a public hospital in San Francisco, he would never have been admitted for a simple, recurrent grand mal seizure. We would have checked his labs and gotten a CT scan, observed him overnight in the emergency room, cranked up his seizure medication, and spit him out the next morning. Instead, at the little community hospital, the doctors were going to take their time, get his seizure medication right, let my aged mother sleep that night. How humane.
I reassured the family. I would come up the next afternoon when he would be recovering from his post-seizure state and would doubtless be discharged. He would probably be better than he’d been before. Terrifying as they are to see, grand mal seizures clear the brain; shock therapy, which sends a jolt of electricity through the brain, is designed to do the very same thing. With a grand mal seizure, everything shuts down at once, and then, rather like rebooting a computer, the faculties come back up, one by one. First the eyes open, then the body moves, then the patient smiles. Speech comes back, then memory. In a certain way, grand mal seizures are good for you; they allow, in the same way rebooting your computer does, for everything to get reorganized, refiled. There’s a clarity afterward, a quickness; the connections are connecting right again.
But when I walked into my father’s private room, with its view of the mountains, its natural light, I was shocked. He was in four-point restraints, arms and legs tied to the bed corners, and he was unconscious, with a bloody bag of urine at the foot of his bed. Mother was sitting next to him, looking frightened and gray.
They had been together by that time for sixty-eight years, in a kind of Romeo and Juliet relationship, if you can imagine how irritable Romeo would have gotten after those first twenty years, how bossy, and how stressed Juliet would have been with anything in life that upset Romeo, including herself. My mother was still beautiful, and my father still a nice-looking man. White hair, blue-gray eyes by turns attentive, skeptical, and teasing, he was careful of his appearance. Shirt and tie and jacket, and manners. He still opened doors for women and moved to the street side when you walked with him. He was always tough. Uncomplaining. I’d never seen him defeated, frightened, or cowed, until that afternoon.
I left the room to find his doctor, or, to be precise, the hospitalist assigned to him for that shift. Dr. Day was alone at the nursing station, typing into a computer. I went over and introduced myself as a physician. He was in a hurry, I could tell, with other patients waiting to be seen, a state I know well. Although he didn’t turn his eyes from the screen, he did explain.
“Your father came in last night with a first-time seizure, and of course we admitted him to rule out a stroke. His first CT scan was negative, so we’ve scheduled him for a repeat CT tomorrow, since, as you know, sometimes the first CT after a stroke is negative.”
I was taken aback. This was not Father’s first seizure but simply another in a series of seizures. And the distinction was crucial, because in a man his age, a first seizure would almost certainly be from a stroke, and he would need the stroke protocol of care. On the other hand, a seizure in a person with a history of seizures means, usually, that he simply forgot to take his medication.
“But this isn’t a first-time seizure,” I clarified. “He’s had seizures for years.”
Dr. Day stopped typing. He looked puzzled. “I’m sure I saw ‘first-time seizure’ in his electronic health record. . . . Let me look it up. . . . Ah, yes, here it is. I thought so. The neurologist’s admission note—‘first-time seizure, rule out stroke.’”
“But it’s not his first seizure, it’s one of many. See, he even has an allergy to a seizure medication on his list of allergies, right here.” I was looking at the computer screen over his shoulder and pointed it out.
“Hmmmm . . . Yes, you’re right. I should change the diagnosis then.”
Dr. Day spent quite a bit of time trying to change the diagnosis in the computer but did not seem satisfied with his results. “Well, we’ll order another CT scan. Sometimes strokes don’t show up on the first scan.”
I went back into Father’s room to get another look. Perhaps I was missing something. Perhaps he’d had a stroke at the exact same moment as his seizure.
Father was asleep. He was alone. There was an IV running in his arm, a catheter in his bladder, and a clip on his finger sending his blood pressure and pulse wirelessly to a computer outside. I sat down on the bed and he opened his eyes. He hadn’t been sleeping but pretending to be asleep. Then I examined him for any sign of a stroke. His pupils were equal and reactive, his arms and legs were of equal strength, there was no change to his face. He was drowsy, for sure; he was still recovering from his seizure, sedated from the tranquilizer he was getting, and sleep-deprived. But that was all.
“When do I get out of here?” he asked me.
“Pretty soon. They want to do another brain scan first.”
Then I went out to ask Dr. Day the reason for the catheter and the four-point restraints. He was gone. No one else was around either. Not a nurse, not a nursing assistant, not a janitor.
Father had a rocky night. He was restless and the catheter hurt him, and he kept trying to pull it out, so he was tranquilized further and kept in restraints. His second CT scan was also negative, but the stroke protocol continued nonetheless. Dr. Day’s attempts to change the electronic health record diagnosis of “stroke” must have been unsuccessful. So when I visited Father the next afternoon, he was still tied up, and the catheter still in. By now his beard was growing out; he was unwashed, exhausted, puzzled, and alone. And weak. Because of the stroke diagnosis, he hadn’t been given anything to eat, and he hadn’t had a calorie for two days.
“How am I going to get out of here?” he asked me. “Can you spring me? They don’t give me anything to eat, they’ve tied me up, I can’t even scratch my nose.”
“You’ll get out of here, but it’ll take a while. The main thing is, when they come in and ask you the date and the place and the president, stop telling them it’s Millard Fillmore. They don’t know who he is, they don’t realize you’re joking, and they think you’re crazy.”
He looked up at me, his blue eyes still capable of twinkling. “Okay.”
Although, as I would see when I later went through his electronic health records, no one did come in and ask him the date, the place, or the president. Every single person—hospitalist, nurse, therapist—simply stood in the doorway, saw an old man unshaven and tied up, and checked the box labeled “Confused.”
Every day he had a different hospitalist, who followed the stroke protocol, although Father hadn’t had a stroke. Speech therapy came by in the morning while he was still sedated from the night’s tranquilizers and determined it would be dangerous to give him anything by mouth. Physical therapy came by and determined it was dangerous for him to get out of bed. Aspirin, blood thinners, and blood pressure medicine were all started. It would have been 100 percent quality assurance, if he’d had a stroke.
Finally Thursday arrived, when the hospital would start preparing its Friday discharges, Thanksgiving notwithstanding, and that afternoon I met the first person I’d yet seen inside his room. She was also the first person wearing a white coat. She carried a clipboard and looked serious.
Father was very sick, she told me—stroke—and he wasn’t allowed to have anything by mouth, so the family should begin thinking about a feeding tube. He couldn’t go home, of course, and she was recommending his discharge to a rehabilitation facility . . . tomorrow.
Who was she? I wanted to know.
She was the Quality Assurance Manager, she said, putting out her hand. Glad to meet you. Your father. Stroke, so sad. She shook her head sympathetically and left.
So the next day he was discharged to the rehabilitation facility, untied, and taken off the tranquilizers. He began to wake up, walk with a walker, and eat the pureed food he was now allowed. But he still had the catheter because no one ordered it to be removed. It hurt and he wanted it out, and that Monday morning, he pulled it out himself and then collapsed.
When I saw him in the emergency room a few hours later, I gave him a fifty percent chance of surviving.
His blood pressure was very low; he was gray, barely conscious, and obviously septic with bacteria in his blood. Now he was admitted to the lower-level ICU, the SDU (Step-Down Unit) on three antibiotics, with the catheter back in, and as a patient who’d had a stroke and couldn’t eat. Even though he hadn’t had a stroke. No one had been able to change that initial diagnosis in the electronic health records, “first-time seizure, rule out stroke.” So—nothing by mouth, saltwater in his veins, tied to the bed corners, and sedated.
Now, I have three sisters, and two of them had been keeping watch, but finally the third sister, the lawyer, flew in, took one look at him, and moved into his hospital room. That’s how we learned what wasn’t being done—feeding him, comforting him, changing the sheets without hurting him, not to speak of getting the right diagnosis and the right treatment.
What were we going to do?
We had a family meeting.
Things were going from bad to worse, we all agreed. We had to get Father out of the hospital as soon as possible, and sooner off the catheter, the restraints, and the tranquilizers. But how?
There was only one way, I knew, to save our father. Only one way. Hospice. We would have to convince whichever current hospitalist he had that the family had decided to let Father go. If we didn’t, then the next stop on his Death Express would be a Clostridium difficile infection from the antibiotics he was getting for the urine infection in his blood from the catheter he didn’t need, followed by a bedsore, a nursing home, and a prolonged, expensive, dwindling death.
So the next morning I tracked down his current hospitalist, who happened to be Dr. Day, his first doctor, the every-twelve-hours cycle of different physicians having come around again.
“We had a family meeting last night,” I began. Hospitalists like family meetings, I knew. “We went over Father’s course and we agreed: he’s ninety-three; he’s lived a good life; it’s time. So we’ve decided to take him home. We’ll have round-the-clock care and my sister the lawyer is talking with hospice right now.”
Dr. Day looked up at me from his computer. He frowned. But he did start typing in the discharge orders. “You know, I would never do this if you weren’t going to do hospice.”
“Yes, of course.”
“He needs two more days of IV antibiotics.”
He sighed. He didn’t really believe me.
I listened to the click of the keys as he typed. How satisfying. Discontinue catheter. Discontinue restraints. Discontinue sedatives, IVs, oxygen, and pureed diet. Discharge patient.
Five hours after those clicks, Father arrived home, rolling out of the ambulance in a gurney and demanding a steak and a beer. He was hungry, he said, and they had never fed him—not once!—in that hospital. He ate the steak and drank the beer, no problem.
A few hours later, hospice arrived. They did everything the hospital didn’t do. They looked at Father and touched him; they sat on his bed. They talked to Mother. They figured the family out and realized pretty quickly that Father wasn’t dying anytime soon. Then they were humane and smart. They let him stay on hospice for two months, until he was recovered from his near-fatal hospital admission and back to his pre-hospital self.
“Hospice” is proof that the problem with healthcare is not in the players but in something else.
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