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Shoot Me Now: “Health Care” in the new millenium

[A medical episode, which started as an eye emergency, and taught me more about getting the treatment than I wanted to know.]

The trouble started innocently enough. I had something in my eye, so I rubbed it. As any mother or eye doctor can tell you, that didn’t help. Three days later my left eye was swelling visibly and growing more painful by the hour. I had a strange, dizzy sensation from being unable to see straight. There was no longer any question of toughing it out, but, naturally, the problem turned into a crisis on Sunday. I didn’t know it yet, but I’d begun a learning experience about everything from acute problems in emergency rooms to the chronic conditions caused by incomprehensible bills.

At eight thirty in the morning, my partner, Paul, drove me to the emergency room. I stood there, with an eye that felt like someone was poking a nail into it, while he filled out paperwork. I was lucky. I had someone to drive me, someone to fill out forms, and someone to hold my hand. There are no words for how screamingly irrelevant forms are at a time like that. I was thinking that every telemarketer in the world knew all about me, but the hospital needed my name filled out on five different forms. What did they think? That it might change between forms one and two? Why couldn’t they just copy my driver’s license and not bother me?

An eye emergency, with its potential for blindness, is treated almost as seriously as imminent death. So I was taken care of quickly, as these things go for walk-ins. In about half an hour, I was shown to a bed and soon thereafter had an IV needle inserted in the thin, sensitive skin on the back of my hand. It was taped down to my hand and attached to nothing. Nobody told me what it was for. The hard external part of the needle kept touching things, like the mattress and the bed railings, and causing new stabs of pain.

A doctor came by who was reassuring and looked concerned. He left to take care of some activity elsewhere in the emergency area. There were curtains surrounding the individual beds, but the brief words I could hear suggested car accident victims had arrived. Hours trickled by because emergency rooms can, apparently, deal with only one emergency at a time, which seemed a tad understaffed for a town of 80,000. My eye, meantime, was swelling visibly and the double vision became noticeably worse.

At eleven, I was trundled off for a CAT scan. I was told to keep my head perfectly still, which was like being told not to think of pink elephants: impossible once somebody mentions it. Furthermore, I had to keep my head still through not one, but two series of scans because some were taken with iodine for contrast. The iodine solution affects the veins, and I could feel it spreading through my body in a wave. It was not unpleasant, but I didn’t know whether it would get worse, which made it disquieting.

The doctor decided my case needed input from a specialist, but no ophthalmologist was available on a Sunday, so the ear-nose-throat doctor was contacted instead. I don’t remember worrying about whether I’d go blind on one side. The exploding pain in my eye took all the energy I had to worry about anything, and the thing that bothered me most was the apparently useless IV needle. It made every motion feel like the skin was being torn off the back of my hand.

When the ENT doctor arrived, he took one look at me and the CAT scans, said the case was way beyond him, and referred me to an eye specialist at the Dean McGee Eye Institute in Oklahoma City. I hadn’t even known there were whole clinics specializing in eye problems. The doctor gave me an IV dose of broad-spectrum antibiotics, just in case the swelling was caused by infection, and told us to get to the hospital immediately. Paul raced home and packed a bag for me, while the antibiotic IV fluid finished infusing. I was given a patch for my eye, which by now looked like something out of a horror movie. Don’t stop for gas on the way, the doctor said. Go straight there.

We went. We arrived at the emergency entrance to one of the big local hospitals at one thirty. The problem with an eye emergency is that you arrive walking. I looked healthy and normal, with my monstrous-looking eye covered by a patch. There were about ten people in the waiting room, generally looking no worse than me. There was nobody else. No receptionist, no nurse, no doctor. A door some way up the hall said “Triage,” but nobody was there either. We stood around, confused, Paul holding my bag, his briefcase, and a huge floppy envelope containing my CAT scans, which he had to be careful not to bend. I was fully occupied with snuffling because my eye was tearing in all directions, including down the inside of my nose. We sat down, totally puzzled.

Some time later, one of the women in the waiting room, who had been chatting with a couple of the people waiting there, stood up and took her seat behind the receptionist’s counter. With a new kind of amazement, we walked up, and she shoved some forms at us. Paul filled them out, and I signed things. I could have been signing murder confessions. He handed them back. She did nothing further. She called no one, she made no arrangements for anyone to see me. She waved us toward the chairs. We sat in the chairs. Nothing happened.

After some time, my partner stood up, walked over, and explained the situation again. We’d been told to get here fast. I needed to see an eye doctor immediately, he repeated. The receptionist gave no sign of being conscious of his or anyone else’s existence and filed papers. It was now half a day after I’d left home in a quest for help, and I had nothing to show for it but a spiking emergency and a really, really annoying IV needle.

A woman in a white coat walked into the door marked Triage. With some hesitation, we walked over and found an overworked nurse. I grew obstreperous about my need for a doctor, and finally he was called. I was shown to an examining room to wait for him.

The other ten people in the emergency room were still waiting when I last saw them with my one good eye. Most of them were not white, were definitely more patient, and probably didn’t have Ph. D.s in biology like Paul and myself. I know the statistics about emergency room visits and how people have to use them these days for routine care. That bothers me, but even more disturbing was that nobody had checked to see who was at death’s door and who wasn’t. If it took serious effort for two professional white people, one of them in perfect health, to get emergency walk-in care, what happens to other people?

I waited for the doctor and thought about anatomy. The eye sits cupped in the bones of the skull. The bone at the back of the eye, which separates it from the brain, is paper-thin. Enough pressure inside the eye cavity can cause the bone to rupture with likely fatal consequences. The pain didn’t seem severe enough for that outcome, but it was getting hard to be sure.

The doctor turned out to be a tall, thin young man who swung into the open door of the little room at about five miles an hour. A shorter-legged person would have been running. They keep residents busy, and first-year residents busiest of all I suspect. Dr. Murphy took a history of the condition, did a number of tests, and then couldn’t manage to measure my intraocular pressure. That requires a puff of air to be blown onto the eye, but I couldn’t open my left eye wide enough for any puffs. It was so irritated that if he gently pried it open, the blink reflex took over and that was that. It was frustrating for both of us. Given that my problem was an eye the size of a lemon, it was important to know how bad the pressure was. I can’t remember whether he finally succeeded or gave up. I do remember that he looked at the data and called in a third-year resident. The new doctor went over the diagnostic data, looked at my horrific eye, and both doctors decided they needed to confer with the orbital tissues specialist. I didn’t even know there was a specialty for the soft tissues around the eye.

Dr. Murphy returned and explained that he wasn’t sure what was wrong, but that the specialist, Dr. Sigler, would be seeing me tomorrow. In the interim, I’d be admitted to the hospital, and, since the most dangerous possibility was a rapidly spreading infection of some kind, he’d continue me on a broad spectrum antibiotic.

I mentioned the worsening double vision, a symptom that really worried me because I thought it indicated some kind of neurological damage. Certain brain conditions can cause double vision. That, he said, was caused by the inflammation pushing the whole eye forward. He took the CAT scans made that morning and showed me the relevant picture. It was amazing. There was my poor little eyeball, visibly being pushed out of its socket. This young man, I thought to myself, will go far. He was the first person to explain anything in what had been a long day.

Pain, all by itself, is exhausting. I remember very little of the process of checking into the hospital. I couldn’t have done it by myself. I don’t know how people manage who have nobody else. Maybe there are social workers standing ready to assist people, but somehow I doubt it.

What I do remember is a nurse starting the procedure to insert a new IV needle.

“Wait a minute! I have an IV.”

No, they had to put in a new IV.

“What! Why? I’ve had this thing all day, banging into things, hurting, and causing problems. It was only used for all of five minutes, infusing some antibiotic, and now you’re saying I can start over? Why? What for?”

The nurse seemed to feel that orders were orders, but I wasn’t going to go quietly. I’d had just about enough.

She finally indicated that the hospital had to have its own IV needle inserted because of liability issues that I was not in the right frame of mind to understand. It seemed truly petty compared to the prospect of added pain and discomfort.

Fine, I thought. Take the stupid enemy IV out. “But why put in a new one right before I try to go to sleep? I’m not on any IV fluids. What do I need it for, bothering me while I do my best to sleep with an exploding eye?”

It turned out that jabbing all comers with IVs is standard procedure, in case the patient needs to be started on something at a moment’s notice. Nobody had explained this before inserting the wretched needle I’d been carrying around all day. It would have been nice to know that extra little bit of torture was not a mistake, which was how it felt. Of course, knowing that I was being used as a pincushion to satisfy some legal beagle might have pushed me right over the edge.

I made some forceful demands about placing the new IV on my forearm, where it was the most out of the way. Even this took argument. Apparently, hospitals like to work their way up your veins to leave themselves as much pristine blood vessel as possible. IVs bother veins and have to be moved every so often. At this point, I didn’t give a tiny damn what hospitals liked. I didn’t need instant IV access at all for my condition. I was being made more miserable for the sake of a nonexistent malpractice suit, and I was not in a good mood.

She tried to soothe me by pointing out this IV would have a soft cannula, in other words the needle part under the skin would be a soft plastic and wouldn’t hurt. I didn’t believe it for a second. However, when she was done, I had to admit she knew what she was talking about. So long as I didn’t actually hit the bandaged area, I hardly knew it was there.

Since the inflammation kept growing rapidly worse despite the first dose of IV antibiotics, Dr. Murphy had ordered the strongest stuff known to science, vancomycin, in the fear that I might have a drug-resistant infection. Drug resistance is everywhere these days, but the last-ditch knockout drugs still work in most cases, including, I hoped, mine. A totally drug-resistant infection would mean I’d go blind in that eye, and possibly die. The optic nerve is a pencil-thick connection between the eye and the brain, and it didn’t take a lot of imagination to know that my life was measured in days if I had an uncontrollable infection. Oddly enough, the prospect didn’t worry me much. I don’t know why. I just remember having no energy to spare for anything besides staying on top of the pain and going through the motions required of me, like getting into bed.

The vancomycin dripping into my vein made it ache and cramp in protest. This was seriously mean stuff. It felt like it was corroding my veins from within, which was precisely what it was doing.

The last order of business was to relieve the pain in my eye. I could understand not being given anything sooner, since it wouldn’t do to suppress the symptoms before the doctor could see them, but I wondered how somebody would have felt who wasn’t aware of that reason. It was one of the many things that hadn’t been explained. Pain relief for a nasty inflammation usually involves corticosteroids, but they depress the immune system, and that was the last thing I needed if I was really fighting a bad infection. The nurse gave me a hospital strength tylenol-codeine pill, before leaving me to my own devices. Tylenol, I told her, upsets my stomach, but she didn’t want to hear it. I felt terribly clever because I remembered enough about hospital procedures to ask that I not be woken in the middle of the night.

Paul raised the back of the bed so I could sleep in a near-sitting position, which reduced the throbbing in my eye. He put the tissues within reach, found extra blankets, opened the window, and generally made me feel that there was someone in my corner. I could feel my blood pressure settling down. He left, obviously massively worried. He had to teach the next morning, but he’d be back in the afternoon.

The codeine did nothing for the pain. I remember noticing the strange patterns behind my closed eyelids. Instead of the usual nebulous, shifting colors, there were very well-defined, three-dimensional shapes. I’d wandered into an incomprehensible art gallery full of nonfunctional vases. Maybe ophthalmologists could use that as a symptom of elevated pressure, I thought. Most of the time, I didn’t think. I just lay there, incapacitated, stranded in an alien universe full of alien shapes. After a while, the codeine put me to sleep.

However, it didn’t put me to sleep for long. A few minutes later–it was actually two hours–a night nurse woke me up to take my temperature, blood pressure and pulse to make sure I wasn’t dead yet. I’m pretty sure I didn’t scream at anyone or try to use a thermometer as a weapon, but it was a near thing. My teeth must have been clenched when I pointed out that I had asked not to be woken, because she got out of there with the speed of a startled rabbit. But the damage was done. My eye hurt so badly I broke into sweats, off and on. The vancomycin-damaged vein in my left arm added a dull, persistent ache and made it impossible to find a tolerable position. Worst of all was the boiling fury that they couldn’t let a sick person sleep. The simple-minded civilian thinks hospitals are places to help you heal. I was rapidly being cured of that misconception. It was hours before I fell asleep again from utter exhaustion.

The next morning, the hospital’s cluelessness about what a sick person wants, or at least, what this sick person wanted, was again in evidence at breakfast. I seem to remember an apple on the tray, but everything else was greasy, fried, or stodgy. It turned my stomach just to look at it on a table several feet away. I covered the dishes back up and put the tray on the other side of the room.

Paul showed up early and unexpectedly, bringing wonderful food from home, but I had no stomach even for that, except half a piece of bread. It was nearly an hour’s drive up and back, and he could only stay about five minutes if he was to make it to his class. I didn’t remember when I’d been so happy to see anyone in my life.

I was visiting the bathroom briefly when the nurse showed up for my morning vancomycin IV. She disappeared. As one of the few ambulatory patients on this ward of cardiac and renal cases, I could stand out in the hallway and collar people. A nurse walked by in purplish scrubs, was duly collared, but it did no good. She wasn’t a nurse. She was a nurse’s aide, and there were several ranks of aides. Some could clean rooms and make beds, others could do more skilled work, like bring meals. Yet others were certified to help patients wash. Further up the scale, an LPN could dispense some drugs, but only an RN could do IVs. My RN had vanished, and nobody else could do anything. I finally received my medication two hours late.

I’d had a similar problem earlier in the morning when my period started. (Murphy’s Law dictated that it was due. Of course, in the pressure of other business, I hadn’t remembered it.) The bed-making aide didn’t know where the pads or tampons were kept. The LPN had more important things to do, but would ask the relevant aide. Nobody came, so I buzzed the nurses’ station. They would attend to it. More time went by, occupied in hoisting myself off to the bathroom for more toilet paper. I buzzed the station again. I was surrounded by people suffering from heart attacks and renal failure, and felt more than stupid bothering the staff about tampons.

When the doctor came, it turned out I was to go to the Eye Institute itself for my eye exam. Apparently, I was an “interesting case” and there would be several doctors. There were. The small examining room filled up with white coats. The good thing about an eye condition is that you don’t mind white coats. If this had been a pelvic exam, I would have been severely annoyed. As it was, I was rather proud to be so important. Usually, I can’t even get people to return my phone calls.

Several of the white coats wanted to see how my eyes tracked finger movements. Not well, of course. I could barely see out of my left eye, and it was so swollen that the eye-motion muscles hardly worked. Then an older gentleman in a regular business suit showed up. He wore a bow tie and was one of the grand old men at the Institute. Whether he deserved his reputation or not, I have no way of knowing because I never saw him again and don’t remember his name, but he had the most amazing hands. I could hardly touch my own eye, and it felt dreadful when any of the doctors examined it, but the doctor in the bow tie could open the swollen eyelids and even palpate the tissues without causing pain. I boggled. I tried to figure out a polite way of asking whether this was a natural talent or something he’d worked hard to learn, but I never found a way to put the question.

Dr. Sigler himself, the soft tissue specialist, had been held up at a surgery, but now appeared, still dressed in his green scrubs. He examined my eye, and looked at the CAT scans pinned to the viewer. He asked some questions, and hemmed somewhat dubiously about the diagnosis of an infection. There was no pus, he pointed out. An infection would have generated pus by now. He leaned toward the idea that it was an immune response, possibly an autoimmune condition.

Great, I thought. That’s all I need: something like lupus following me around for the rest of my life. He said an illness known as pseudotumor could mimic the symptoms I had, except that the eye muscles themselves were also swollen in that condition, whereas in my case the CAT scan showed that they weren’t. It was all very mysterious, and the flock of doctors adjourned somewhere to discuss it. I sat in the little room, vegetating as well there as anywhere else, until someone remembered to shepherd me back to my ward.

Meanwhile, I spent the day complaining. The tylenol-codeine pills did nothing but make me queasy without touching the pain. My eye was still swelling, although more slowly, and was now the size of an orange. A medium-sized orange. It was horribly sensitive to everything, even puffs of air, and there was no eye cup large enough to cover it without touching it. I complained about needing a bigger eye cup, but they don’t make them any bigger than the one I already had. After the nurses grew tired of listening to me, a prescription for a morphine derivative and naproxen (the generic equivalent of Aleve) appeared. It seemed sensible to try the softer drug first, but there wasn’t any naproxen at the nurses’ station. It hadn’t come up from central supply. The nurse told me there was morphine or nothing. I suggested we call the doctor about this. The naproxen appeared. What do people do who are not healthy enough, aggressive enough, and educated enough, to chase after their own medicines? Unfortunately, hospital-strength naproxen also barely dented the pain.

Dinner arrived. Whether it was due to the medications or the pain or both, I still had no appetite, even after two days with nothing but a half slice of bread. Everything on the tray looked inedible, starting with the country-fried steak. This kind of steak, for those who don’t know, is a thin piece of overdone meat covered in a thick layer of breading and fried in some oil I could smell right across the room. The hospital wasn’t trying to be mean. This was Oklahoma City and some of the locals dream about country-fried steak, but to me the stuff was down there with beetle grubs and palolo worms. I quickly covered the dishes back up, and put the tray on the other side of the room.

Paul arrived, bringing more food I didn’t have enough liver function to eat. He, as a tall man with a healthy appetite, took an interest in the dreadful stuff from the hospital kitchen. He tried to make me more comfortable, and tried to distract me by discussing the world outside my four walls and the hospital smell.

Then it turned out I was lucky to have an empty stomach. My evening vancomycin IV made me throw up about five minutes after it started circulating in my system. I was told this is a common side effect of the antibiotic. Since there was nothing in my stomach except water, it wasn’t as nasty an experience as it could have been.

Vancomycin or not, the eye inflammation was not settling down. I felt even worse than the previous night and while I tried to go to sleep I thought about Jim Henson, the creator of the Muppets, who had gone very quickly from living to dead. My problem had the potential to go from being a mere speck in my eye to an entirely changed life, or no life, in no time. I had a sense of detachment and calm which I remember thinking was odd. Probably it came from not really believing in blindness or death.

I took the first of my morphine-type pills, a white thing the size of a pinhead. I waited for the pain to disappear. This, after all, was the real thing, the hard stuff, the alpha and omega of painkillers. It did absolutely nothing. At least, it did absolutely nothing for my pain. It made me too woozy to worry about it, but the sensations themselves were unchanged. The feeling was most peculiar.

What it did do was put me to sleep, but only until midnight when it wore off and the pain woke me again. The swelling was now so severe that it reached all the way to the jawline and midline of the upper lip, and there was even a slight swelling at the bottom of my right eye in sympathy with the left. The slightest motion of my eyes hurt, but the only way to keep your eyes still is to paralyze the eye muscles. I rang the nurse’s station for another dose of morphine, but only an RN could dispense it. The RN was elsewhere. Instead, an LPN came to take my vital signs. I do not, I told her, need my temperature taken. Or my blood pressure. Or my pulse. What I needed was sleep. Sleep. Get me the damn morphine and let me go to sleep. She couldn’t give me my damn morphine. Only the RN could do that. I decided to stand in the hallway until I got what I needed. Lying quietly with the excruciating pain and waiting for a nurse to show up in her own good time was more than I could do.

While I waited, I could hear a man across the hall, a bed-ridden cardiac patient who’d been brought in that afternoon. He was repeatedly and patiently explaining to someone that it was time for one of his regular medications, something for blood pressure, I think. A nurse came by to give me my tiny white pill. When I went back into my room, the fellow across the hall still hadn’t received what he needed.

Two hours later, someone woke me up to take vital signs.

#

Dr. Sigler’s day must have started as early as a first year resident’s, because he came by the next morning at 6:30. I spent several minutes of his time expressing my opinion of night nurses, vital signs, and justifiable homicide. Well, not exactly, but he did write an order on my chart that I was not to be disturbed at night.

For the first time, the swelling was no worse than it had been a few hours earlier, but the doctor didn’t like it anyway. It wasn’t improving quickly enough, he said. I couldn’t have agreed more.

Breakfast and lunch were again inedible, and one of the nurses, a Native American named Yvette, noticed that I wasn’t eating. Was I anorexic, she wanted to know. Now, I’m a naturally thin person, but I’ve been known to eat three desserts when I can get them and I’d never been accused of dieting, to say nothing of anorexia. I wasn’t eating because I had no appetite. My body was trying to tell me something, as far as I was concerned. Besides, I may be thin, but I’m not that thin. I have reserves in the usual places. Then she shifted to worrying about fluids. How much water had I drunk? Not nearly enough, apparently. I was going to get dehydrated. She gave me a twenty ounce container of water with a straw and told me to drink as often as possible. Personally, I thought she was a busybody. It was my first taste of what nursing was really supposed to be, and I didn’t like it.

However, an hour later, after dutifully sipping on the water as per instructions, I needed to visit the bathroom, and then I realized that my last visit had been ages ago. Some time the day before, perhaps. She’d been right about the dehydration.

I didn’t like the bathroom. There was a toilet at one end and a shower at the other, which was fine. What was not fine was a contraption made out of white PVC pipe with black straps that looked like a poor cousin of an electric chair. It could be rolled to the toilet for people unable to sit far enough down, and the straps were to keep people upright who needed that extra assistance. Its function was benign, but it looked awful.

I spent all of that day sleeping off a succession of morphine tablets, with brief intervals of painful lucidity while waiting for the next dose. During one of those intervals, I heard a major conference across the hall about the cardiac patient whose condition had inexplicably worsened. Then word trickled up from the patient about the missing night medication. There was much back and forth and somebody was quite clearly in disgrace, as they bloody well should have been. I was finding out what happens to people who aren’t well enough to demand and get their medications.

During another interval, I took a walk–or, to be honest, a totter–up and down the hall. Dr. Murphy had told me I had to move around as much as possible. I’m a relatively athletic person and I was amazed at how doddery I was. Maybe Yvette was right that I needed to eat something, even if I didn’t have any appetite. I thought maybe I could face an orange, if I had to.

A minister dropped by while Paul visited that evening. At first, I didn’t even realize that’s what she was. She had a quiet, unobtrusive, calm manner that was the spiritual equivalent of the ophthalmologist’s hands. I am, as you may have gathered, not a particularly patient person, and being in severe and constant pain did nothing for the sweetness of my disposition. At the best of times, I frown on uninvited people, phone calls, or mail. Yet nothing about this woman irritated me. A sense of wonder came over me at the oceans of benevolence there had to be behind her calmness, and at the calling which led her to share it with others. I have no idea what her religion was, except that obviously, being a female minister, she must not have been a Catholic. Their loss.

That night nobody hassled me, and the next day I woke feeling much better. The pain was noticeably reduced, although the swelling was down only slightly. Dr. Sigler still didn’t approve, ordered another CAT scan, and started me on IV corticosteroids. That stuff was at least as nasty to the veins as vancomycin. Heroin must be much gentler, because otherwise I don’t understand how addicts do it.

The doctor also pointed out that my eye patch was contributing to the tremendous irritation of the conjunctiva and soft tissues around my eye. But if I took it off, I touched my eye all the time before I could stop myself. That wasn’t good either. There was no solution. Nobody makes a simple patch big enough for this sort of condition.

Later in the afternoon, a very tentative, very blonde girl peered into my room. She carried a clipboard.

“I’m with a class?” she said doubtfully, as if I might contradict her. If I did, I could see she would take my word for it. “I’m studying to be an LPN? Could I take your vital signs?”

I said, “Sure.” It wasn’t the middle of the night and she looked very earnest.

She did a careful, thorough job, and wondered dubiously whether she could ask me several questions. She was supposed to learn how to take a medical history, too. So we were talking away, when I happened to mention my eye patch issue. She brought her instructor over, who was also blonde, but in her thirties and not the least bit hesitant. She was a wonderfully energetic and cheerful woman named Ms. Harris, and the sort of person who made me feel optimistic and healthier, just looking at her. The eye patch was a Nursing Problem, and she set her class of eight or nine women to solving it.

And damned if they didn’t come back with one of those dust masks painters use, which they thought could be cut to size and made to work. Paul had arrived for his afternoon visit and got into the project. He’d worked in New Guinea many years ago, and had improvised plant misters out of nothing, and electrical timers for the misters out of even less. He’s very handy and always carries a pen knife. Between him and the student nurses, in a few minutes the dust mask had been cut and shaped to something that could cover my eye without touching it. I was comfortable for the first time in days and tickled absolutely pink.

Why, I expostulated to Ms. Harris, can’t working nurses do things like that? But it was a rhetorical question. I never saw a nurse or a nurse’s aide so much as sit down to drink a cup of coffee, and I was quite a regular walker in the hallways, passing the nurses station several times a day. I never saw them chatting or doing anything except working as fast as they could to take care of everything they had to do and to never, ever, ever, make a mistake doing any of it.

“And what,” I asked, “is the big idea behind splitting nursing tasks so fine that bringing breakfast trays and bringing tissues requires two separate people?” This was something that had been puzzling me. It seemed arranged for maximum inefficiency.

“That’s the Team Nursing concept,” said the hesitant young woman.

This sounded like a group of competent professionals, orbiting around my bed, making sure I was doing well. But what it really meant was that one nurse did medications, another did IVs, a third checked whether drugs arrived in the ward from Central Supply, and so on. The result was that the one person you needed was always elsewhere, because there was only one of her to go around, and you could never get what you needed when you needed it. The fact that the system made it impossible even for good nurses to do a good job didn’t enter into it. Creating umpteen levels of certification meant hospitals never had to hire someone with more than the minumum of education to do their job??or pay them a cent more than their qualifications required.

Paul took me on my longest stroll so far, outside the hospital to a little duck pond on the grounds. Real air and light were a revelation and the ducks were a miracle. The light was impossibly bright. Why weren’t more of us patients out here? I remembered seeing pictures of hospital grounds littered with patients in bathrobes. Then I realized that nowadays everyone in a hospital, except me, was too sick to move. That is, everyone except me and one thin, frail lady who showed up, towing an IV stand and smoking. Smokers are the only outdoor people left. She fed the ducks, talked and laughed and enjoyed herself, cancer and all. I admired her. I still admire her.

Dinner time approached and it turned out that Paul had brought a special surprise: sushi. They looked and smelled so delightful, I found myself feeling hungry for the first time in four days. Dr. Murphy came in just then on his afternoon rounds, and his eyes grew wide at the sight of the sushi. He looked impressed, although he refused the offer to partake, and even more impressed at Paul’s altruism in eating the cafeteria chow so that there would be more sushi left for me.

By the next morning there was so much improvement in my condition that the doctors decided to take me off IV vancomycin and continue with another, weaker antibiotic in pill form. However, the pharmacy couldn’t seem to locate either my regular corticosteroid injection or the new antibiotic. Hours went by. My eye seemed to be improving steadily, and if that was due to the medications, stopping them suddenly like this might be a bad idea. Another few hours went by with me nagging about the drugs and the pharmacy apparently on another planet.

The conscientious Yvette arrived with a clear plastic bag of IV vancomycin. I could see the label. “No,” I told her, “the doctor’s orders have been changed.” “No they haven’t,” she responded. “Yes, they have,” I insisted. Being meticulous, she went off to double-check. It turned out there was a new person working the order update desk, and by two pm she hadn’t reached the nine am orders yet. This also meant it wasn’t the pharmacy goofing off on my antibiotic. They’d never received an order for it. The question in my mind was which would come first: my discharge from the hospital, or permanent damage from terminal understaffing.

I was lucky. I was sent packing the next day. My eye was no longer painful and the swelling was much reduced, although still hideous by normal standards. I returned home to a regimen of pills too complicated to follow, even with a Ph. D. in science. I knew I was a wuss to be overwhelmed, but I was. I had two different pills to take, an antibiotic and Prednisone (a corticosteroid). I was still on both because the cause of my problem remained unknown. The antibiotic was to be taken four times a day, not with meals and with plenty of water. The Prednisone had to be taken twice a day, definitely with meals and with an antacid because it is very irritant, and the dosage was to decrease down to half pills twice a day and then to half pills once a day, then one every two days, and so on and on and on. It made my head swim. I had to make myself a calendar with each dose and time on it, and tick the pills off as I took them or I became hopelessly confused. AIDS patients taking tens of different drugs, each on its own schedule, should be given honorary degrees.

The pills were far from the worst of it. When I returned home, the chronic phase set in: financial wasting disease. It started with two fat envelopes from my insurer about use of out-of-network physicians. I was to call phone numbers listed somewhere in all that paper, but the numbers had only bad music and no satisfaction. In an emergency, doctors are still close enough to their roots to send the patient to the best person for the job, but the insurance companies see it differently. And I was one of the lucky ones. I had an insurance company to fight with.

Then there were the bills themselves. A deductible was straightforward enough. I could handle that. But then came co-pays. Ten percent of this, twenty percent of that, thirty percent of the other. I tried to make sense of the bills, but I couldn’t. I passed calculus (barely), and do my own complicated taxes. Not only that, but I have some background in medicine and know what “Lab agglutination proc” and “nemboplute 10cc” mean. If anyone, who is not an insurance adjuster, should have been able to understand those bills, it was me. And I didn’t. I couldn’t help feeling that was intentional.

My essential wussiness surfaced again because I gave up. After a few days of phone calls, voicemail, bad music, more voicemail, dropped connections, more phone calls, voicemail, real live human beings who couldn’t answer anything or do anything, more music, more voicemail, more phone calls . . . anyway, I gave up. There are people, tens of thousands of people, who deal with that every day, while they’re ill, for months and years. Here again, I was lucky. I could afford to give up and throw money at the gougers. By now, I was sure that this result was also intentional.

It took weeks for the double vision to go away, but the sense that capitalism and medicine don’t mix has never gone away. Every problem I had, starting with the emergency room, had its roots in cutting corners to save a buck. Understaffing at every level was the most obvious, most dangerous, and most unpleasant consequence, for both professionals and patients.

At the same time, nobody wants to pay even more for medical care. National health insurance was shot down in the early ’90s after insurance company-funded ads said it would cost more and do less. Logically, that means we’ve made our choice to pay less and get less, and we should live with it.

We’re getting less, all right. That part has worked perfectly. But we are not paying less. Per capita medical costs in the USA are higher than any other country’s in the world. Our personal, out-of-pocket expenses are twice and three times more than the norm in other industrialized countries, such as Great Britain or Germany. We’re paying more and getting less. If our priority is choice, we’re not getting that either. The lists of in-plan physicians can be so short that the choice boils down to paying hundreds of dollars more for an out-of-plan doctor or driving for hours to find an “approved” one. Nor can we say that at least we have the best care in the world. US infant mortality is at the bottom of the scale for First World countries, and our life expectancy after surviving infancy isn’t all that great either, by comparison. There is something wrong here.

It’s hard to see how it could be otherwise, given that our medical dollars pay to staff insurance companies as well as hospitals. There are dozens of insurance companies, all with their own secretaries, receptionists, janitors, adjusters, actuaries, medical experts to second-guess doctors, handlers of regulatory issues, directors, executives, and presidents. This, we’re told, is efficient. It’s certainly efficient at pulling money out of us.

More is at stake than mere money. Doctors and nurses spend hours of each day filling out mountains of redundant forms. That’s time they can’t spend on you and me when we’re sick. Practicing doctors are bailing out of medicine because dealing with insurance companies is unbearable. Students avoid medical careers because they hear about the problems. And I wonder what the statistics would show if someone studied the number of stress-related illnesses among patients dealing with insurance issues. The problem expands beyond time and stress right into medical practice. The insurance companies do everything to minimize their costs, at any price, so liability issues and expense become more important than medical judgment or patient comfort. This is insane.

All the other problems afflicting medicine are smaller than medicine itself. Malpractice, bad doctors, untrained nurses, even hospital administrators, none of them corrupts the entire practice of medicine the way the influence of the insurance companies does. However, although identifying the problem isn’t too difficult, figuring out the solution is. Atul Gawande has an excellent article in the April 4, 2005 New Yorker on this very topic. He talks about ways of funding health care, and how none of them have actually provided cheaper, faster, and better medicine. Except one. On a small scale, techniques worked that failed as soon as the group practice grew. Maybe that’s a starting point. Maybe we need to pay more attention to scale, and less to imagining we can force people to be good doctors or good patients.

The situation is desperate. That is obvious to everyone, except maybe the insurance companies, because the current situation is perfect for them. In my case, for instance, they’ve won on all counts. Being ill was bad enough, but I would have gotten over a simple life-threatening disease. What I can’t get over is the annoyance of a thousand irritations: waiting for emergency care, waiting for IVs, waiting for drugs, waiting for tampons, waiting on the phone, waiting for more bills. I’ll do my damndest never to darken the doors of a hospital again. I’m still paying for insurance, God knows why, because next time they won’t have to cover any expenses. If I don’t get better on my own, I’ll die. It’ll be less trouble.

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The Whole Is Greater . . .

[This was originally part of an essay contest sponsored by the Economist and Shell Oil Co in 2003. Oddly enough, considering the sponsors, the topic was "Do we need nature?" This essay didn't place, but, as Wodehouse says, like all authors, I know that what I wrote is wonderful (in spite of the equally universal need to maybe just polish it up a bit here and there). So here it is.]

While eating breakfast and leafing through a magazine, I saw the call for a discussion about whether we need nature. Surely, this was a trick question. Without nature, I’d have no plate, no eggs, no energy to cook the eggs, and no me, for that matter. The answer seemed more than obvious. But the questioners must have wanted more than a simple “yes,” or they wouldn’t have insisted on an answer shorter than two thousand words.

Perhaps they’re right. Even at its simplest, as a mere source of raw materials, nature has more than one level. If I were turned into a pile of ash, I’d be worth pennies, but it would take serious money to buy my component biomolecules. Anyone who pays for vitamins or drugs knows how much big molecules can cost. Sometimes they are beyond price. The whole field of genetic engineering depends on a heat-stable enzyme found in Thermus aquaticus, an obscure bacterium hidden in hot springs at Yellowstone National Park. (By extension, bioengineering depended on national parks, too). As for what remains to be found, it could be something as small and welcome as a means of removing tooth plaque without the need for all that tedious flossing, or it could be the cure for old age. And yet, arguing for nature on the basis of utility seems to miss the point as badly as valuing humans only for the pieces into which we could be broken.

Besides, nature’s usefulness doesn’t say how much of it is useful. A mere reference collection should be small on a planetary scale, but the evidence from seed banks, botanical gardens, zoos, and parks indicates that the only permanent reference collection is as big as all outdoors. Yet, even once science puts a number on how big that is, it still won’t answer the question of what, exactly, “useful” means. Nor is the simple extreme of leaving everything untouched an option. We have to muck about with nature. Otherwise there are simply too many smelly, dangerous, freezing, broiling, and sickening aspects to put up with.

There is a very broad line between paving everything and touching nothing. How much we can muck about is far from clear, and that means choices, decisions, and problems. Who decides how much is enough? Who gets the money? Who gets the muck?

Two very different issues are intertwined in these questions: ethical limits and biological ones. Ethics are particularly difficult in diverse societies because they depend on consensus. In a cosmic sense, ethics may be absolute, but enforceable limits are ones believed by a large majority of people. Edicts handed down by popes or ethics experts or even the law will be circumvented if they violate too many people’s feelings on the matter. The consequences of that are nontrivial, as evidenced for instance by the growth of the Mafia during Prohibition in the United States. The really bad news is that, as with all issues requiring consensus, there is no shortcut to reaching it. People need time and information to make their decisions, and I, much as I might like to, don’t constitute a consensus.

Nature, it’s been pointed out, is a Mother, so it stands to reason that the difficulties only grow worse. Important as ethical limits are, they are not fatal, in themselves, but breaking nature’s laws is punished by death, and ignorance of the law is no excuse. It is the queasiness about what lies beyond lines we haven’t crossed that leads to the feeling it is dangerous to take destiny in our own hands. However, we’re over a hundred thousand years too late to worry about altering destiny. We’re doing it. The only question is whether we will do it well.

One obvious way to do badly is to find the limit by stepping over the edge of a cliff and saying, “Oh, that’s where it i-EEEEE.” Science can help avoid this outcome because it is a good tool for finding the edges even as it pushes us closer to them (which suggests that there may be justice in the universe). Being a tool, though, science doesn’t relieve us of the responsibility of deciding how to act on the information it gives.

The same problems surface in all kinds of environmental and biomedical issues, but I’ll take genetic engineering as an example. There are all kinds of guesses about what might happen with unrestrained bioengineering. Nightmare visions of clones farmed for their organs compete with the horror of a planet covered in bespectacled copies of Bill Gates. But it’s not the problems we’re afraid of that bite us. Dinosaurs cannot be made from chicken’s eggs, with or without added ancient DNA, nor can genetically modified food make a Frankenstein. (Yes, I’m sure. I’m a biologist who sequenced DNA for a living.) The human body, people once feared, would die from the violent speed of a horseless carriage. These days we go at Mach 3 without disintegrating, but the real problem is keeping our cities alive.

Likewise, the real problem with cloning, to take one instance of bioengineering, is certainly not the bare fact of it. I have two neighbors who are clones, but they’ve never followed orders from a groupmind. They’re identical twins. Admittedly, they are clones of each other, not of their parents, but clones are clones. There’s been a hitch with artificial cloning of human beings because of our unexpectedly complicated eggs, but once we succeed, we’ll have a new, expensive, and less pleasurable way of producing human beings. (As if overpopulation wasn’t enough of a problem.)

Cloning organs, as opposed to whole humans, suggests a range of scenarios. Heart cells grown in a flask for transplant don’t seem upsetting, but the same heart grown in a farmed person would be beyond horrible. On the other hand, if the heart is part of an immune-altered pig, it seems no different from killing the pig for pork. I do get upset about killing pigs, but the destination of the pig’s parts is not what matters. To put it bluntly, the limit of cloning for me seems to be the shape involved, together with the feeling that the shape could sit up and say good morning. And even that simple rule doesn’t answer many further questions. Should rich people have access to cloning when it is too expensive for poor people? Are the byproduct embryos people or not? If they are, can they be deprived of life so long as we give them proper funerals, in the same way as we treat many adults?

Another aspect of bioengineering is the novel combination of genes. What do we know about the real dangers of mixing genes from jellyfish and geraniums? The answer is: not much. Genetic engineering started yesterday, for all practical purposes. Human allergies or other immune responses to “frankenfoods” are only starting to be studied. The environmental effects are barely known. Viruses can transfer genes beyond the target organisms in unexpected ways, so almost anything is possible. If a gene were introduced to increase seed set in wheat, it might end up increasing seed set in weeds. What is worse, the effects last forever and propagate, because unlike pesticides or pollution, genes don’t break down. Another consideration is that the businesses developing these foods want cheap, good-looking products. The fact that they may have all the nutritional value of styrofoam is not the companies’ concern.

Some consequences are easy to extrapolate from previous, similar situations. Breeding the perfect cow or rice causes the loss of other varieties, and potentially lethal susceptibility to the slightest perturbations. Poor farmers who can’t afford the cost of the new varieties lose their livelihoods (which suggests a sardonic, not to say cynical, sense of humor among those pushing GM foods as the answer to famine).

There are some truly ominous signposts of future directions. One of the first genetically engineered crops does not resist pests or weeds. It resists weedkiller. Farmers can grow a patented crop that allows them to easily kill all weeds with large doses of herbicide. This means more damage to the environment, more residues to the consumer, and more expense to the farmer. It seems like a stunningly bad idea, except that the same company sells the patented seed and the weedkiller.

The usual objection to dire warnings about crossing invisible lines is that we’re still here. How could the warnings matter if we’ve survived? But that’s exactly the point. We find out what’s survivable by surviving it. If we don’t, nature has no appeals court. Do we really want to make that kind of experiment? It seems self-evident that the correct course to follow with respect to biological limits is to stay away from them and to take what scientists call the conservative option. This is not the same thing as political conservatism.

Limits mean that questions about nature can have wrong answers. But, as with ethics, the difficult questions have no right answers. The desirable balance of profit, convenience, cost, diversity, clean air, fresh water, health, and wealth is determined by social consensus. And this is one discussion where it makes a great deal of sense to include as many people as possible, because then some of the people getting the muck will have a voice to let everyone know where the problems start. This is good, even though it slows down progress–especially because it slows down progress. The progress being slowed in that case, may be the kind that’s headed over the cliff. The greatest good of the greatest number may be more than a hopeful ideal. It may be the only way to survive.

I’ve spent the day mulling what seemed a simple question and found mainly that I can’t answer it. This is frustrating, and my favorite way of dealing with that is to bicycle down to the beach and watch the sun set. I find it impossible to stay annoyed while looking at the waves foaming pink in the evening light. There are island mountains far offshore, and today their summits are trailing rose-colored mists in the turquoise sky. As the whole world briefly glows, it becomes obvious to me that I want much more than mere survival. Nature, in the common meaning of the word, does things for us that I’ve never felt in a parking lot, even if the asphalt is made of transformed Devonian seas and of gravel that was a mountain once.

Asking whether we need nature is like asking whether a fish needs water. It’s like asking whether a fish needs fish. It’s just a question of how many parts of ourselves we’d like to cut off.

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