My parents never entirely trusted Western medicine. “They’re just treating the symptoms,” Mom would say. By the family rationale, it was counterproductive to take painkillers to mute symptoms because, in doing so, you turned down the volume on urgent messages from body to brain. And true healing depended on listening to the body. Throughout my youth, I was inclined to agree. It was only near the end of my time in Idaho that I learned to love conventional medicine.
I’d come home from a road trip and was cleaning weekend detritus from the car when I found the pizza. It was really good pizza, from Boise, with the kind of delightfully prissy ingredients that were impossible to get in Burley: fennel sausage, heirloom tomatoes, sheep cheese. Lingering over all this were the subtle aromatics that can only be gained by slow baking for 8 hours in the back of a vehicle. I pondered this smell as I carried the box up to my apartment. At the kitchen table I dissected a piece of sausage and peered at its innards like a Greek seer searching for portents. It actually seemed okay, and I was hungry.
Around midnight I woke up with something sharp slowly, but inexorably, driving through my abdomen. It seemed plausible that my spleen was growing a horn, or that my duodenum had sprouted a disastrously pointy erection. The pizza, I surmised, had been a mistake.
I crawled to the bathroom and tried to throw up, without success. Then I took some aspirin, went back to bed, and visualized waves of electric blue pulsing around my intestinal tract. Dad had taught me this trick when I was 7. The idea was to cure the ailment by irradiating the area in healing light.
At that moment, however, what I wanted more than almost anything else was for someone—as Mom put it—to just treat the symptoms. The pain had grown from a piercing point to a generalized agony of stretching and compression, as if a pair of brawny belly dwarves were competing in an enthusiastic tug-of-war with my intestines, having first tied them into a complicated knot. I poured myself a tall glass of Wesson Oil and drank it, hoping to purge. The results were disappointing. Four in the morning found me drenched in sweat on the kitchen linoleum, which for some reason seemed like the most comfortable place in the apartment.
By dawn, the pain had resolved into a single rapier, planted resolutely in the lower right quadrant of my abdomen, an indication—I happened to know—not of food poisoning, but of appendicitis. I drove myself to the emergency room. There were a few hours of doubled-over waiting, a blood test, then more waiting. An attendant confided that they were taking bets on my diagnosis. Appendicitis was the five-to-one favorite. A few minutes later, the same attendant showed me to a gurney and wheeled me deeper into the hospital. Then an anesthesiologist was shaking my hand, and shortly thereafter time folded in on itself. I was hazily aware of being alone in a dark room with a new pain below my abdomen, in utterly the wrong spot. Had there been some terrible, unforeseen complication? My groping seemed to confirm my direst fears until a nurse explained that it was customary to insert a catheter during operations.
I drove myself home 12 hours later. My stomach was full of staples, but my appendix was gone, along with the rapier. I resumed work after a week, and sit-ups after a month—about the time it would have taken me to die if I hadn’t had access to Western medicine. What did visualization have on that?
Dad suffered appendicitis about a year later, and afterward there was a change in the tone of our conversations about medicine. The nice thing about the allopathic tradition, we agreed, was that its effects were universally consistent. It didn’t matter if the patient believed in the treatment, or what he thought about his sickness. It didn’t matter if the surgeon was compassionate. All that mattered was that a competent technician carried out the correct procedure.
In a follow-up appointment I asked my surgeon what had caused my appendix to turn traitor. I wondered if I’d been wrong to blame the sausage. His response was vague: Perhaps an infection, he said. When I asked why infection had struck at that particular moment, he just shrugged. Mom’s point about doctors caring more about symptoms than underlying causes seemed correct in this case. But my grateful post-operative self was disposed to put it a bit more charitably: Conventional medicine is concerned with helping pragmatically, using the information available to accomplish what it can. It focuses on the visible, pressing problems. You don’t have to know why a fire started to put it out.
This philosophy has made Western medicine awesomely powerful. So powerful that I could see why its partisans feel justified in sneering at alternatives. The force of visualization, or of homeopathy or acupuncture, looks wan and anemic when placed alongside the muscular lifesaving effectiveness of antibiotics, organ transplantation, or surgery. Which made me wonder, for the first time, what was it that made alternative medicine so attractive?
Of my immediate family, Mom was the most frequent adventurer in unorthodox treatments. She’d started exploring alternative medicine because Western medicine often failed to make her feel healthier; in fact, sometimes it made her feel worse.
In 2002, after some routine tests, her doctor told her she had osteopenia and hepatitis C. He explained that osteopenia was a thinning of the bones, and that the hepatitis C could destroy her liver. Fortunately, both conditions were treatable. He recommended a drug called Fosamax for the former and a regimen of antiviral therapy for the latter.
When she left the doctor’s office Mom was upset. She hardly ever got sick, and—though her hair was more salt than pepper, and she had smile-wrinkles at her eyes—she looked a decade younger than her age. She’d felt vibrantly healthy until her doctor told her she was ill and decrepit. She wasn’t sure she could trust him as she had trusted our previous family physician, Dr. Johnston, who had taken care of us for years. Mom had respected Dr. Johnston enough to keep asking questions until she felt completely confident in his directives—or until they had agreed on some alternate course. She knew he wouldn’t think she was an anti-scientific crazy person if she explained her doubts. With this new doctor Mom didn’t bring up her concerns, which all really amounted to one big question: Were his prescriptions tailored to serve her, in all her physical and psychic complexity—or were they tailored to serve her lab results? She assumed the latter.
“He basically said, ‘You have X, so you need to take Y,’ ” Mom said.
Poking around on the Internet, she learned that a second hepatitis C test was usually performed to see if the disease required treatment. She also stumbled across people writing about how they thought Fosamax had made otherwise-robust bones weaker. She arranged to take the hepatitis test and ordered two books on osteoporosis.
As it turned out, Mom’s hunch about her new doctor’s guidance turned out to be precisely correct. The second hepatitis test came back negative, and the specialist who read the results said there was no need for antiviral therapy. The lifestyle changes she made after reading the books on osteoporosis also proved successful: She was eating more calcium-rich foods, spending more time in the garden to soak up vitamin D, and running more frequently. Her next bone-density reading showed that she was no longer in the danger zone.
Thanks to her skepticism, Mom saved some money that she would have spent on drugs—savings both for herself and society at large. When I started reading about the costs of healthcare I was shocked to learn that the people who study health policy generally agree that between a fifth and a third of all medical care delivered in the United States is unnecessary. One study pegged the minimum cost of this waste at $500 billion a year.
As boggling as the dollar amounts are, the physical consequences of overtreatment are worse. Every medical procedure—unnecessary or not—carries some risk. Fosamax may, in rare circumstances, cause femur fractures, and the antiviral hepatitis drugs often cause depression, fatigue, and fever. The small risks add up because inappropriate tests and surgeries are performed with alarming regularity. Elliott Fisher, a public health scientist at Dartmouth Medical School, has estimated that unnecessary treatment kills over 30,000 Americans each year (a minimum number, counting only those covered by Medicare), more than the estimated 26,000 Americans who die annually because they can’t get medical care.*
At the root of Mom’s suspicions was her fear that Western medicine is designed to create healthy profits rather than healthy people. It’s undeniable that the desire to make money provides powerful incentives for pharmaceutical companies to advertise drugs of dubious efficacy, for doctors to choose lucrative surgeries rather than unprofitable therapy, and for hospitals to invest in flashy new technologies instead of searching for ways to keep people healthy. But, to understand the market, one must also understand culture. Market incentives are shaped by our desires and fears. We patients wouldn’t be susceptible to pitches from medical advertisers if we did not believe them on some level. It’s the patients who bear the costs of medical sprawl, measured both in dollars and lives, and it’s the patients who campaign most fiercely for its intensification. When researchers assemble evidence that some test or intervention is doing more harm than good, it’s the patients who protest the reforms. Americans believe, at a fundamental level, in the power of medical technology.
The evidence that conventional medicine is dangerously overused doesn’t make alternative medicine more valid. But as soon as I’d started looking at why people were attracted to alternative medicine, I’d found myself confronted with an equal and opposite quandary: What could explain the attraction to unnecessary conventional medicine? The solution to both mysteries, I suspected, was one and the same. When in distress, some people flinch toward nature, some toward technology. But both reactions are triggered by the desire to do something. The efficacy of the fix is less important than its availability. Doing nothing is intolerable.
Mom, for all the skeptical acuity she directed toward conventional medicine, became willingly credulous when offered untested New Age therapies. When I called to plumb her memories of the Fosamax incident, she prefaced her story by recommending a new practice she had discovered, called “Earthing.” The idea was that, because our feet are generally insulated from the ground by rubber and foam, people build up an unhealthy electric charge in their bodies. Mom had bought a bed sheet woven with silvery carbon-fiber wires, and when she slept on this sheet, the filaments were supposed to conduct ions out of her body and into the grounding plug of an electrical outlet (a wire ran from sheet to wall socket). The results, Mom said, were obvious.
“It might just be psychosomatic,” she said, “but the first night that I slept on it I went out so deeply that I was groggy the next day.”
I read a couple of the studies supporting Earthing, and was not impressed. They were printed in the Journal of Alternative and Complementary Medicine, and the methods were sloppy: no controls, no blinding, no demonstrations of statistical significance. It looked like hokum.*
On the other hand, this treatment made sense on a metaphoric level. The lack of connection between humanity and the earth was, after all, a legitimate problem in my eyes. I couldn’t remember the last time I’d set my bare feet on the ground. I wanted the kind of life that would allow me to dig my toes into the dirt every once and a while. There was a conceptual logic to this product that remedied the lack of contact between the human sole and the skin of the earth—it was just that the mechanism for this reunion didn’t make sense. Inserting a silver-shot, plug-in bed sheet into our disconnected lives (even supposing it did provide some physical benefit) wouldn’t address the deeper problem. It seemed like a classic case of just treating the symptoms. Nonetheless, this bit of ceremony, this gesture toward reconnection, seemed to be improving Mom’s life. She felt less driven, she said, less scattered, better able to enjoy the moment. She was being healed, I think, by a metaphor.
The place where metaphor meets medicine is difficult to study. If all Western knowledge were laid out on a parchment map, these particular seas would be represented by a vague cloudy mass, marked by depictions of strange creatures and the words HERE LIES THE PLACEBO EFFECT. Eastern medical traditions, which do not draw a hard line between mind and body, have devoted considerably more attention to sketching in these shoals and shorelines. But I worried I wouldn’t do justice to ayurveda or Qigong if I examined them with Western expectations. I wanted information that had been credentialed by the scientific system I understood. And so I set course for the waters where placebo is known to reside.
Placebo was not originally a medical term. It simply means, in Latin, “I shall please.” In the Middle Ages, however, it took on a connotation of obsequiousness: A placebo was a yes-man, a courtier who would say whatever his king wanted to hear. By the 1800s, the term was being used by doctors to describe fake pills given to please demanding patients. Then in the 20th century, placebo took on a slippery third meaning: a treatment that shouldn’t work according to the rules of biochemistry, but does all the same. At first this was just an annoyance—evidence that a clinical trial was flawed or poorly designed. It’s only recently that scientists have begun to see the placebo as a phenomenon to be investigated in its own right, rather than an inconvenient static to be weeded out of otherwise solid research.* Those who study placebo no longer see it as self-delusion or fakery, but as a little piece of something large and strange: a process by which information, symbolism, and cultural meaning modulate the body’s normally subconscious functions. The placebo effect is like the reflective glint of eyes in the darkness, a small part of some massive beast whose shape our lights are as yet too weak to illuminate.
One especially intrepid placebo hunter, the contemporary Italian scientist Fabrizio Benedetti, has performed a series of experiments to show how something as intangible as belief can have physical consequences. In one experiment, Benedetti hooked up his subjects to an intravenous line with a saline drip so they could not tell if they were being given medication. He then instructed them to squeeze a hand exerciser while a partial tourniquet around their arms restricted blood flow. I’ve tried this. It hurts. The oxygen-starved muscles send out panicky pain signals as the lactic acid builds up. When Benedetti’s subjects (perhaps the word is victims) rated their pain level at a 7 out of 10, he told some that he was providing a strong analgesic and that they should relax as it took effect over the next few minutes—and it worked, even when Benedetti added nothing to the saline drip.
Benedetti’s hypothesis was that the imagined analgesic had created a real one. When he had suggested to his experimental subjects that they were about to feel the effects of opiates, they had started producing them on their own. Our native opiates are called endorphins, and several other studies have shown that the belief that a palliative is coming is enough to trigger a release of these painkillers.
The real trick came 15 minutes later, when Benedetti secretly added Naloxone to the intravenous lines. Naloxone is an opiate blocker—it inhibits painkillers. And even though the subjects didn’t know what was happening, those who got the Naloxone felt their pain rapidly increase. Benedetti had demonstrated that a physical chemical could block the effects of an imaginary painkiller.
Though this is incredible, it also makes intuitive sense. Anyone who has ever gone to the movies is familiar with the power of a story to produce measurable physical effects. Narrative and meaning can cause hearts to race, stomachs to clench, palms to sweat, and tears to flow. We tend to think of these effects as minor, and therefore unrelated to physical health, but in some cases emotion can cause lasting changes in physiology. Harvard neurologist Martin Samuels has documented scores of cases in which heart attacks seem to be triggered by fear or grief: the mother who learns her son has died, then goes into cardiac arrest. Samuels published a hypothesis (in the journal Circulation) to explain how a cascade of chemical reactions starting in the brain could stop the heart, providing a plausible mechanism whereby metaphorical heartbreak could lead to physiological heart failure.
The closer you look at placebos, the weirder they get. Large sugar pills work better than small ones, capsules work better than tablets, and pink pills perk people up, while blue ones slow them down. All of these disparities seem to be caused by the stories patients weave from whatever information they have: Big tends to be associated with more oomph than little; capsules (especially those cool dual-toned capsules containing tiny round balls) are associated with more high-tech power than tablets; and warm colors tend to be associated with energy, while blue is mellow (although Viagra is rapidly re-branding blue as an emblem of vigor). It’s the meaning patients give these pills that charges their power. That’s why anthropologist Daniel Moerman has suggested that we rename the placebo effect the placebo effect the meaning effect. The powerful-looking pill is a synecdoche, a part of Western medicine that represents its authoritative whole. Even when it contains no active ingredients, the pill is full of meaning. And meaning is the key that unlocks the pharmacies of the mind.
Of all the symbols of medicine’s transformative power, the greatest is the surgeon’s blade. Sham surgeries provide a stronger “meaning effect” than pills or even injections. For instance, a test of a controversial surgery for treating heart disease (bilateral internal mammary artery ligation) showed that most of the patients experienced substantial improvement. One Kansas City man said, “Practically immediately I felt better. I felt I could take a deep breath.… I figure I’m about 95 percent better.” The number of nitroglycerin tablets he was taking fell from five per day to two per week. But this man had been part of the placebo group: He had been taken into the operating room, where a surgeon had made two incisions in his chest, and then stitched them back up. Of the patients receiving sham surgery, 87 percent experienced improvement, compared to 67 percent of patients who got the real thing.
Why do people ascribe such power to surgeries? Moerman (whose excellent book Meaning, Medicine and the “Placebo Effect” has been propped open by my keyboard as I write this) thinks it has to do with the mechanistic goggles through which we see the world. We understand our bodies by borrowing metaphors from machines: The brain is a computer, the heart is a pump, and the arteries are pipes, which sometimes get clogged. Surgeons speak at this level of metaphor. They reroute plumbing, patch leaks, and remove obstructions. Anyone who can change the spark plugs in an engine can understand the logic of surgery: It provides meaning that Americans can accept. And patients must not only accept, but commit to this meaning, allowing their chests to be cracked open and their hearts to be stopped on the faith that the coronary artery bypass, for example, will work.
People yearn for metaphor, and today the metaphor for healing generally comes packaged in technological medicine. The unnecessary surgeries and fruitless testing regimens that regularly occur in the United States are often requested by patients seeking to fill a vacuum of meaning. One physician, blogging under the handle Dr. Panda Bear, described what it was like to face the ever-growing demand for treatment:
“I have received a few patient complaints and many of them essentially boil down to, ‘That doctor didn’t do nothing,’ after I sent them home with no testing and no strong medicine. I have also on a few occasions, in the course of a thorough history and physical exam, been interrupted by angry family [members] demanding that I shut up, stop wasting time, and order some tests. It’s magic that they want; wonderful, deeply satisfying, mystical American Medical Magic. Blinking lights! Blood tests! X-rays!”
American Medical Magic is an expensive and dangerous way of generating ritual meaning. And yet, I could feel no scorn for this doctor’s patients. They needed something done, even if it was only a ritual.
Clinical medicine was a latecomer to the Enlightenment, and two centuries after Newton, very little of what doctors did was backed by science. A review (by physician Paul Beeson) of treatments recommended in the 1927 edition of Cecil Textbook of Medicine found that 60 percent of the remedies therein were harmful, ineffective, or merely anodyne, while only 3 percent provided useful treatment. A scientific revolution occurred in medicine in the following years, so that by 2001 the Institute of Medicine (an arm of the National Academies) judged that 50 percent of all treatments were backed by evidence. This improvement was made, in part, by the avant-garde of science, and in part by a rear guard, which policed doctors whose techniques ran counter to the norm.
This rear guard’s founding document was Abraham Flexner’s 1910 report on North American medical schools. At the request of the Carnegie Foundation, Flexner toured institutions throughout the United States and Canada. Many medical schools lacked laboratories, up-to-date medical texts, or a means of providing clinical experience to students. Others taught techniques according to the experience of professors, rather than according to the objectively verifiable evidence. Some perpetuated long-debunked methods. In the years following the Flexner report, the number of medical schools fell by half. Those that remained embraced science.
To make science objective you have to strip away the imponderable, the confounding, and the messy—which effectively eliminates humanity from the picture. A scientific scope of focus excels in examining quantifiable lab results, but struggles to contain that mix of vague concerns and contradictions known as a patient. Flexner drove many dangerous quacks out of medicine, but he also drove out healers who were able to improve their patients’ lives more by listening carefully to them than through physical repair. Medicine has, by and large, disavowed responsibility for the patient’s overall happiness, instead defining itself narrowly as a contest between technology and disease. The medical system focuses so tightly on what must be done to fight disease that it sometimes cannot see what is best for the patient. As the physician Leo Galland wrote, “The eclipse of the patient is the most profound, lasting, and unfortunate effect of the Flexner report.”
By the time I was born this eclipse was set in stone literally. As the doctor Esther Sternberg pointed out in her book, Healing Spaces, you can see it in the architecture of hospitals:
Often the hospital’s physical space seemed meant to optimize care of the equipment rather than care of the patients. In the early 1970s, one could still find hospitals where the only department that was air conditioned was the Radiology Department, because the delicate equipment could not tolerate the summer heat. As reliance on and awe of medical technology increased in the mid-twentieth century, the comfort of patients was somehow pushed aside and their surroundings were often ignored. Hospital planners assumed that patients could adapt to the needs of technology rather than the other way around.
Some of the very same mainstream doctors who’d effectively rooted out snake-oil were also the ones who noticed problems with the revolution they’d brought about. Among these reformers was Leon Eisenberg, one of the first to rigorously apply the scientific method to clinical psychiatry. Eisenberg had always been something of an outsider—he was openly rejected, first from medical schools, then from residencies, because he was a Jew. He was skinny, and his cheeks were scarred by severe adolescent acne. He was also brilliant—he graduated first in his class. And he was easy to like—he had a joke (often a Jewish joke) for every circumstance. He eventually gained a place of respect in the Ivy League institutions that had rejected him, but he never lost the contrarian eye of an outsider.
In the early 1960s Eisenberg assembled enough evidence to show that Freudian psychoanalysis—then ascendant—was doing little to help children. He performed the first randomized clinical drug trials in child psychology. These trials laid the groundwork for the treatment of attention deficit disorder with drugs like Ritalin. He was aghast, however, at the way these medications were reflexively employed to treat an ever-wider range of problems. It became clear to Eisenberg that doctors were not thinking critically, but were instead simply trading one belief system for another.
More and more, Flexnerian medicine asserted a strict Cartesian divide between body and mind. The discovery of chemical treatments for the brain helped bolster the belief that all illness, even mental illness, was simply a matter of chemistry. It helped bring medicine closer to a state of Newtonian perfection, in which every action might be traced to caroming particles, in which disease, along with personality, love, and hope, might be controlled by a skillful shot in the great molecular billiard match. Eisenberg had helped turn the tide, moving away from a Freudian fascination with the individual and toward the study of chemistry and genetics; but in his last reminiscences before his death, he said that this change had constituted an “intellectual tsunami,” a rush from one extreme to another that haphazardly knocked down whatever inconvenient evidence impeded its progress.
The evidence clearly showed that, as Eisenberg wrote, “A sizeable proportion (one-third to one-half) of the cases in general medical practice have a significant emotional or behavioral component. Some emotional problems are obvious anxiety states or neuroses; many more appear in the form of bodily complaints that have no ascertainable organic basis and reflect response to psycho-social stresses; an important minority (one or two percent) present themselves as severe psychiatric illness.” Nonetheless, Eisenberg wrote, most physicians were either skeptical of the evidence that disease could have a nonphysical antecedent, or “downright arrogant in their dismissal of it.”
Some physicians recoiled from this evidence because it was not their area of expertise. The skill of genuinely caring about patients seems foreign to the deductive skill of matching symptoms to disease, and disease to treatment. In fact, in the collective imagination these talents are so incompatible as to be mutually exclusive: The softhearted physician stands at the opposite pole from the hardheaded one. The medical ideal has become an emotionally stunted savant who, with cool Holmesian logic, puts together the solution while others are dithering with feelings—television’s Dr. House. But only in television’s projections of our cultural dreams can science so readily provide fixes. Often the doctor must help the patient create his own solution, a feat that can be infinitely more complex than matching illness with cure.
If you want to see conventional medicine struggle, watch what it does when there is nothing more, physically, that can be done. Death, because it’s a problem with no solution, can bring out the worst in our fix-focused culture. Nowhere is the temptation to fill the vacuum of meaning with medical technology more expensive or more painful than in the confrontation with death.
My parents suggested I look up an old family friend, a former doctor I’ll call Francis, who, they said, had been thinking deeply about how he could help people who were beyond help. I called him, and he invited me to his house. Francis’s hair and beard are white, and neatly cropped. He wears rimless glasses that magnify his eyes, giving him a vaguely owlish look. We spoke in his living room over cups of herbal tea. As we talked, the sun dropped behind the hill until we were sitting in darkness.
Francis said his interest in the end of life began during a short conversation with a postmaster. It was in a small town on California’s coast, and the post office she ran was a trailer on the side of the road, lined with fake wood paneling and a few rows of brass boxes. She kept an electric heater by her desk. Every day she would wheel her oxygen tank out to her Oldsmobile, lower herself into the seat, and drive to work. It was only a few hundred yards, but she was too short of breath to walk even that distance.
Francis was aware of all this when he stopped in to check his mail. They were all neighbors in that town, and it was hard not to know each other’s business. He waved hello, took the letters from his box, and asked if she had anything else for him.
“Actually,” he remembered her saying in her smoker’s voice, “There is something.” She was suffering, she explained. Her emphysema was getting worse, and chemotherapy hadn’t slowed her lung cancer. The doctors had told her there was nothing else they could do for her. She asked Francis to get her enough barbiturates for an overdose.
“I thought her request was reasonable,” he said. “She was saying, ‘Hey I can’t take it now, and it’s going to get worse. Let me get out of here.’ And it—it just seemed intellectually reasonable. And, I think, emotionally reasonable.”
If you follow Western medicine to its logical conclusion, when there are no more surgeries that can be done, or pharmaceuticals that can be taken, it only makes sense to find a final solution: one last fix. (Francis provided that fix, which is why he asked me to use a pseudonym. Decades had passed, but he worried that the story might invite harassment.)
Though it was utterly logical, there was something about this exchange that bothered Francis. Perhaps it had been the impersonal nature of the encounter, the frictionless sangfroid with which they had negotiated. He raised one eyebrow and said to me, “Funny that that conversation would happen in a post office, right?”
Post-office transactions are constrained to trivial exchanges. A few cents for a stamp. A few words about the weather. The color of the curb outside limits the length of conversations. Yet there they were, making arrangements to determine the question of existence for this woman.
Although Francis was discreet, word got around. People driven to extreme measures—prison inmates, rebel fighters, the terminally ill—become proficient in the transmission of illicit information. Before long, others approached Francis, and he gave them the pills they wanted. The way things were going, he could have become an undercover Jack Kevorkian—helping people die without the media spectacle. But Francis bristled when I compared him to this doctor. “He’s a pervert,” Francis protested. “He’s insane. No, I was just interested in helping this woman end her suffering. If I could have found another way to end it without …” He paused, then settled on the bluntest way of putting it, “Without killing her, I would have.”
Which is why it came as a shock to Francis when he learned from a mutual friend that instead of taking the pills, she’d let her illness take its course. Intrigued, he inquired after the other people to whom he’d prescribed barbiturates. Not a single one had hastened their death. What had made these people choose the long decline they had so desperately wanted to avoid? In the end, despite the fact that there was no cure for these people’s illnesses, each of them had found a cure for their desire to die. It was a disturbing mystery. After all, Francis had been willing to help them die, ignorant of the further recourse that had made their lives worth living. Another doctor might have puzzled over this a while, then shrugged it off. But for Francis, it shook his already unsteady faith in his career.
“I was running an ER at the time so I could see these people—people who drank, people who smoked a lot, people who ate too much, people who were accident prone, people who had trouble with relationships. I started seeing that their sicknesses or injuries didn’t come out of a vacuum.”
Francis would treat the symptoms of domestic violence or alcoholism (set the broken arm, stitch the laceration), but a week later the same patients would return with similar wounds.
“We put Band-Aids on them and sent them back to the same crap. I began to see that I was mainly trained as a mechanic. Really what I was operating was a high-tech turnstile.”
Perhaps it’s obvious, Francis said, but at the time it was a revelation to discover that a person’s culture, the way they conducted their relationships, their values and priorities in life, their fears and aspirations—that all these airy intangibles could result in real, visible, bodily harm. Francis had gone to medical school with the desire to help people, and patching up the same patients each week didn’t satisfy this desire. Working in an emergency room is a noble vocation, he said, but he didn’t feel as if he were really making lives better. After months of troubled consideration, he told his supervisor that he would be leaving the hospital, and leaving medicine. This was only partly true. Although he gave up the formal work of a medical doctor, it was a desire to be a better healer that drew him away. If the immaterial ephemera of emotions could make people sick, Francis reasoned, the reverse could also be true: Perhaps a patient’s mind could salve physical infirmities.
Francis started by reading everything he could find on holistic medicine. He taught a class on the subject at a community college. And he started practicing yoga. These days, you can find yoga offered between kickboxing and cardio pole dancing, but back then it had not yet been stripped down to a purely physical workout. Francis learned how to pay close attention to the way his body reacted, or failed to react. He learned to tease apart the physical reality of pain from its psychological attendants—the fear that the pain would grow worse, or that it would continue forever. He discovered what every Buddhist novice discovers: When you study pain existing in the present moment with genial curiosity, it often becomes bearable, even insignificant.
A few years later, a group of cancer patients asked him to attend one of their meetings and share some of these tricks for coping with pain. He stuck around afterward to listen. It was about what you’d expect. People rehashed what doctors had told them, chatted about the way they felt, made dark jokes about their common situation, and solicited advice. There was something in this that interested Francis. So much so that he asked permission to come to their next meeting. He kept attending for the next 5 years.
In these meetings Francis observed the cancer patients slowly unravel the snarled threads of their fear and sadness. Often these strands led to the least expected places. The true source of suffering was often only tangentially related to the indignities of disease. Once people understood what was eating at them, their pain often became manageable. These people, he realized, were knitting meaning from what had seemed a meaningless tangle of misery.
As he listened, Francis thought back to the postmaster and asked himself what meaning those barbiturates had held for her. There was no way of knowing for sure, but he suspected that the pills had represented control. He had diagnosed life as the postmaster’s problem, and he had provided the appropriate prescription. But maybe he’d made a misdiagnosis. Perhaps the greatest cause of her suffering hadn’t been physical pain, but the steady erosion of her agency: She was losing control of her body, her daily schedule, and her power of movement.
For those few people Francis had furnished with barbiturates, the drugs must have provided an off-label dose of metaphor. “Those pills—having that parachute in hand—gave them a sense of control,” he said. “And that sense of control—maybe it was just the illusion of control—but it was enough to evaporate that particular kind of suffering. The result is that people wanted to be around longer.”
These days Francis facilitates cancer support groups and he begins by asking people what bothers them about having cancer.
“Of course I don’t say it that way. You can’t ask straight on or people get pissed. You’re supposed to understand that having cancer really bothers people. Okay, cool, but what about it bothers you? And after they talk about it a while they usually say, ‘What bothers me about it is I’m worried I’m gonna die.’ All right, next question: What bothers you about dying?”
Figuring this out can take weeks. “It’s not the kind of conversation you can have in a post office,” Francis said. The answers people come up with are often revelatory.
“Eventually, you might come back and say, ‘I’ve thought about it for a while and what bothers me is I have unfinished business with my son.’ Well, vaya con Dios, dude! Go do it.”
The solutions aren’t always so tidy, but when I went to one of the cancer support groups, patients told me these sorts of conversations sometimes felt more lifesaving than anything else the doctors were doing. For people with a poor prognosis, it can seem as if there are only two options available: Choke down more treatment, or accept that the time has come to die. Francis offers a third option. He works to separate the unanswerable fear of the unknown from those fears that spring from soluble problems: the fear of hurting a family member, the fear of pain. On its own, death doesn’t always seem so bad. And when people confront their fears they often find themselves more vitally engaged in the substance of life than they have been in years. One support-group member told me, “If it doesn’t kill me, cancer will be the best thing that has ever happened to me.” She considered, then said, “And if it does kill me, I think that will still be true.”
Francis is humble enough to know that his tools won’t work for everyone. Sometimes, people would literally rather die than walk down the dark corridors of their souls to face their fears. Even the patient doesn’t want to do this work, he insists that it’s imperative for the doctor to give painstaking attention to the unique circumstances of each case before acting. It’s the failure to listen to patients that makes medicine inhumane, he said. When I asked him for an example of what he meant, Francis recalled a meeting in which oncologists were discussing a patient’s breast cancer. The patient had said she didn’t want surgery for any reason, yet as the doctors took in her information and began to reason out the possible treatments, that bit of data failed to penetrate.
“And they all said, ‘The only thing we can see here is surgery,’ ” said Francis. “They were thinking about how to fix the problem, not about what is good for the patient. And these are truly wonderful people. They care about their patients. They are personally warm. But the nature of our medical system is such that doctors must immediately come up with a solution, then move on. And that allows for our amazing technical expertise. But if you only see the problem, that obscures the real person.”
Physicians and family members who decide how long to stave off death sometimes find themselves trapped between natural and technological ideals. We often default to the worst of both worlds, romantically insisting that life is sacred, while employing only coldly rational treatment to keep the motor running.
It’s more important than ever for the medical system to combine technical excellence and empathetic wisdom because the bulk of ills afflicting Americans are not sicknesses that can be cured, but chronic problems. Obesity, heart disease, and depression are incurable by technology alone—these modern epidemics require practitioners who have the skills to address physical symptoms and the emotional intelligence to teach patients how to fundamentally change their lives. Perhaps this is asking too much of medicine, but there’s nowhere else to turn. The doctor’s examination room has become, Francis said, “the closest thing we have to confessionals in secular society. The problem is, doctors don’t have priestly training.” And the physicians best situated to provide this sort of pastoral care, the primary care doctors, have year after year been afforded less money and less respect.
Johns Hopkins doctor Kerr White was one of the first medical leaders in the United States to notice the gap between what medicine could provide and what patients needed. White was the lead author of a 1961 paper in the New England Journal of Medicine, entitled “The Ecology of Medical Care,” which demonstrated that of any 750 people who become sick, 250 would see a doctor, nine would go on to be hospitalized, and only one would require the services of a high-end university medical center. This meant that primary care medicine (a term popularized by this paper) was doing most of the heavy lifting. But the country was investing its best resources in serving that single patient who filtered through to the research hospital.
This paper became a frequently cited classic, but the tide was flowing in the other direction, toward the laboratory and away from anything resembling priestly care. In the same period that public health leaders accepted the importance of primary care, it withered. In 1949, 59 percent of doctors in the United States were general practitioners, and that number has consistently slid lower. As of 2005 only 8 percent of medical school graduates were going into family practice. The brightest medical students were encouraged—with promise of both honor and money—to become physician scientists and find new ways of prolonging life in unusual and desperate cases. By 2010 the average specialist was earning almost twice as much as the average general practitioner.
When Wells Shoemaker, a particularly promising medical student at Stanford, told a celebrated neurosurgeon that he had decided to become a pediatrician, she said, “What a waste,” as if this were the equivalent of Mozart choosing a career in automotive sales. And Shoemaker found—even after he had hurdled the discouragement of his mentors—that the economic forces were against him.
In 1981 Shoemaker set up his practice in the California farming town of Watsonville, where he worked with a mostly poor Latino population. He took special pride in giving these patients the best care possible. In most cases the diagnoses were obvious, and treatment was simple. But hidden amid the unending cases of asthma and fevers were subtle symptoms of larger threats. On one occasion Shoemaker was struck, as he examined a child who had arrived after an asthma attack, by a puzzling absence of symptoms. There was nothing physically wrong. An efficient doctor would have moved on to the next patient after dispensing some advice and perhaps a prescription. But, as was his habit, Shoemaker had examined the baby on the mother’s lap, and he could see that the mother was uncharacteristically upset. He asked her to tell him what happened from the beginning, then listened patiently. As she spoke, the woman began to sob and eventually admitted that she had come to the doctor’s office for shelter from an abusive husband. Despite the fact that the child was physically healthy, the boy had been in true danger, and by looking at the big picture—rather than just the quantifiable symptoms—Shoemaker had been able to help.
When one of his families went to the emergency room, Shoemaker considered it a personal failure. To prevent emergencies before they happened, he spent days every year simply educating the parents of kids with diabetes, asthma, and allergies. This worked. In the final 5 years of his practice not a single one of his patients was admitted to the hospital for complications of diabetes or asthma—a stunning achievement. But Shoemaker wasn’t paid for keeping patients healthy: He was paid for treatments. There was no billing code for stopping domestic abuse before it happened. He received no reimbursement for the hours of advice he dispensed on the phone, and was paid an insignificant amount when he left a family dinner to come see a child in the office. He’d make more money if he simply told the parents to go to the emergency room and then drove in later for a quick visit. In one particularly egregious example, Shoemaker cut his own paycheck by close to $50,000 a year by teaching the parents of hemophilic children how to administer a clotting factor, rather than insisting that they come to his office every time for the procedure.
All this would have been simply annoying if Shoemaker were making a decent income, but he was barely scraping by. The problem was that most of his patients were covered by Medicaid—the insurance for low-income families—and the reimbursements he received were not high enough to support the cost of keeping the lights on and his staff paid, let alone support his family. Usually, doctors deal with this by accepting only a small percentage of poor patients and relying on the higher reimbursements from private insurance. But fewer than half of Shoemaker’s patients had private insurance, and he refused to turn anyone away.
“These disparities in reimbursements are terrible,” he said, “but what’s worse is that it gives doctors a rational way to discriminate against the poor. It’s just a facile excuse for bigotry. I couldn’t do that.”
Then, during the recession of the early 1990s, the money ran out. For gut-wrenching months Shoemaker agonized over the finances. He upped his hours until he was spending three nights a week in the office, and had increased his patient load by 50 percent. But more of his patients than ever were using Medicaid. The practice that Shoemaker had spent 11 years building was eroding away beneath his feet. In hindsight, he says that if he had been more mature he would have compromised to save his practice. Instead, he opted, as he put it, to “simply hammer harder, even if I were bending the nails.” He drew down his line of credit to pay the rent until he reached his debt limit. He was physically haggard, emotionally spent, and his entire family was suffering. In 1992, having exhausted his resources, he abandoned his practice. He was not the only primary care doctor who had been hanging by a thread: Fifteen of the 45 doctors in Watsonville closed their doors during that recession. This kind of culling recurs periodically across the United States.
“I was financially undone by a stupid fee-for-service scheme which did not recognize or reward many of the extra good things I tried to do,” Shoemaker said. “In fact, fee-for-service punished these rather severely.”
Fee-for-service means that physicians are paid like mechanics: The more broken-down the customers are, the more repairs (and dollars) there are to make. It’s the main mode of medical payment in the United States, though there are plenty of other systems—some doctors receive a fixed salary, some doctors are paid more if their patients stay healthier. But to those who conceive of the human body as a complex machine, an automotive pricing scheme seems most logical.
Money talks, and when it comes to health spending, it talks about the kind of medicine we believe in: We believe, it seems, in academic tertiary-care hospitals, diagnostic tests, and surgeries. The other stuff—educating patients, caring about them, and helping them change their lives—are all nice enough; but they are low on the list of economic priorities. Belief, when coupled to an economic engine, can shape reality in its image, and today most doctors can’t afford to have conversations with patients, let alone serve as confidante and coach. On average, Americans spend just 30 minutes, not per visit, but per year, with their primary care doctors (less than half the time spent in comparable countries).
In many cases, the primary care clinician has been reduced to a mere barrier that patients must hurdle before proceeding to a specialist. When general practitioners relinquish their pastoral role—that is, their capacity to comprehend and care for the person as well as the patient—they become petty bureaucrats. Given the lack of time for care, it’s no wonder that so many Americans demand unnecessary treatments. Perhaps this is why the words treatment and care—which, in their common English meanings, are almost antonyms—are synonyms in the realm of medicine.
Kerr White, in his study of primary care, became increasingly convinced of the importance of care, in its common meaning. In an interview near the end of his career, he respectfully acknowledged what is usually called—with a bit of a sneer—“just the placebo effect.”
“I think it’s the most undervalued, ubiquitous therapeutic intervention that we have,” White said. “It has an all-purpose, extremely powerful effect, and it’s caring. It’s a manifestation of love, if you like.”
This, I suspect, is what draws people to alternative medicine. When Mom visits her chiropractor, a warm and thoughtful man, they spend at least 45 minutes together. They talk during part of that time, and the rest is spent in massage. Either way, he is exquisitely attentive to her. “It’s like his fingers have X-ray vision,” Mom said. “He can find the painful spot in seconds, just through touch.” Mom never goes expecting a cure, but always leaves feeling better.
One particularly clever method for studying this phenomena was devised by Harvard medical researcher Ted Kaptchuk, who measured the power of caring and conversation on people with irritable bowel syndrome. Kaptchuk masked the study by treating patients with sham acupuncture needles designed to telescope in on themselves and stick to the skin without penetration. The patients thought they were in a clinical trial of acupuncture, but caring was the real treatment on trial. They were divided into two groups, and when members of the first group arrived for treatment the practitioners explained that, to avoid biasing the experiment, they wouldn’t talk. Then they briskly went about their work, performing the sham treatment. When the second group arrived, on the other hand, practitioners greeted them warmly and asked about their symptoms. They listened, asked for elaboration, expressed empathy, and allowed periods of silence. They inquired as to how the illness related to patients’ relationships. They invited interpretation of the cause and meaning of the maladies. Only then did the practitioners perform the sham acupuncture. For this group, the reduction in symptoms was more profound than the effect of any irritable-bowel-syndrome pharmaceutical on the market. For patients in the first “efficient” group, by contrast, measures of quality of life actually fell until they were slightly worse than those on the waiting list who received no treatment.
It’s important, however, not to take this too far. When it becomes apparent that an old way of thinking is insufficient to explain the way things work, Kerr White wrote, “new concepts and theories are apt to be misrepresented as claiming to explain more than the evidence supports.” Which is why the excitable sometimes assert that the placebo effect proves that the mind causes, and can cure, all ills. It is this kind of shallow acceptance that makes people believe that they are at fault for their diseases, or that they can dissolve their tumors with sheer positivity, or that they are always better off without technological medicine.
The fact is that there are many ailments best treated with medical technology. When someone comes to a clinic complaining about headaches, persistent hypertension, and the sense that their heart sometimes races unaccountably, 99 percent of the time the cause will be their diet, the number of espressos they are drinking, their feelings about their job, or their failing marriage—but in rare cases the cause will be a pheochromocytoma, a tumor on the adrenal gland that may be surgically removed. The staggering challenge for clinicians is to accept both possibilities, to treat the body and care for the patient’s immaterial whole, to be both physician and metaphysician.
When we spoke, Wells Shoemaker happened to mention that he’d recently had an appendectomy, and I told him the significance of my own appendicitis. In reply, he quoted a bit of doggerel he’d composed while recuperating:
“You might lie to the judge and still dodge the perjury/But appendicitis, Dude, won’t go ’way without surgery.” Then, just to even the score, he added, “Wouldn’t it be nice if depression could be removed by surgery?”
The great failure of modern medicine is its attempt to treat the symptoms of our modern environment (our anomie, our inequity, our stress) as if they conformed to the Flexnarian model of scientific medicine—that is, as if they were diseases, each with a single, universally applicable cure. It shouldn’t be surprising, Leon Eisenberg wrote, “that physicians will avoid problems they feel inadequate to manage by relying on the promiscuous prescription of tranquilizing drugs.”
It shouldn’t denigrate our tremendous achievements in medicine to point out that this model is outdated and simplistic. What we need now is a new model that preserves the physics of the appendectomy while embracing the ways that meaning, relationships, and coherence affect human health.
You can find a parallel to our current confusion in post-Reformation England. At that time Protestants still accepted that witchcraft caused disease, but they had rejected faith in holy water, icons, saints, and the rest of the shields against the unknown that had leaked from paganism into Catholicism. Historian Keith Thomas thinks that this is why English Protestants executed witches, while Catholics—for the most part—did not. “Protestantism,” Thomas wrote, “forced its adherents into the intolerable position of asserting the reality of witchcraft, yet denying the existence of an effective and legitimate form of protection or cure.”
Just as Protestants rejected the power of pagan symbols, we have divested ourselves of nonmedical methods of coping with illness and death—dismissing, as superstition, the clergy, the psychoanalysts, the shamans, and the poets. Faith in medical technology denounces suffering as illegitimate until it is expressed as physical damage. (The word just, in the phrase “it’s just in your head,” speaks volumes on this point.) As a result, people experiencing real suffering with nonphysical causes often try to shoehorn the symptoms into something recognized by the International Classification of Diseases. To paraphrase Thomas, you could say that medicalization forces us into the intolerable position of asserting the reality of these diseases, yet denying the existence of a legitimate form of protection.
When healing is reduced to a battle between technology and disease, patients lose both responsibility and control. “Medical procedures turn into black magic when, instead of mobilizing his self-healing powers, they transform the sick man into a limp and mystified voyeur of his own treatment,” wrote Ivan Illich, the radical Austrian philosopher and Roman Catholic priest. “Medical procedures turn into sick religion when they are performed as rituals that focus the entire expectation of the sick on science and its functionaries instead of encouraging them to seek a poetic interpretation of their predicament or find an admirable example in some person—long dead or next door—who learned to suffer.”
There’s something wrong with a society that turns reflexively to its medical doctors in moments of suffering.* Now, when Francis looks back on his experience with the postmaster, he found it outrageous that he—in his capacity as a dispenser of drugs—was the person people turned to for help.
“If we were truly a civilized society, we’d talk to each other long before we considered suicide,” Francis said. “We’d have community networks. In the old days if you were even out of sorts everyone knew about it and they’d drop off a lasagna for you.”
Even after learning all this, I tend to yearn for an easy technical fix when faced with the reality of illness. As I write, my 3-month-old daughter is sick for the first time in her life, and if there were some good medical solution, I’d be at the drugstore in seconds flat. It’s just a cold, but she doesn’t know that, and she begs for help in the only way she knows how. When she cries, her cuteness disappears and she resembles one of those bald, bloated, character actors that are cast to play Mafia goons. She looks, come to think of it, like an enraged, red-faced Paul Giamatti. She glares at me from under accusatorily tilted eyebrows and cries out in horrified, choking howls. I worry about what my neighbors might think, probably because I feel responsible for her misery. I’ve already done everything I can. I’ve suctioned out her mucus with a bulb syringe and even—when concern overcame disgust—put my mouth directly over her tiny upturned nose and sucked. But there’s no cure for colds, or for the underlying discomfort they bring. And it strikes me that I react the same way when afflicted with pain and illness that I don’t understand. I go to the doctors and demand relief. I become petulant when they don’t deliver.
I can also get relief, however, through simple human contact, and through some basic explanation of my suffering. Accepting life, I reason over the crying, means accepting suffering. That doesn’t mean anyone should seek out pain or refuse medical attempts to reduce suffering—it’s only when medicine is expected to stop all suffering that it begins to dominate and smother life.
I don’t know how to tell my daughter that this cold is an inescapable part of life, so instead, I sing to her. I sing, “Oh What a Beautiful Morning,” from Oklahoma!, because, randomly, it seems to be her favorite, and usually she starts to squeeze her eyes into little parentheses and make winsome, dimpled smiles by the time I get to the chorus. But this time she only pauses in her sobbing for a verse. Then, she starts crying again, because that’s the way life works—nothing is certain. And then, eventually, she grows quiet, and drifts off to sleep, because that is also the way life works—everything ends.
* Fisher’s number is extremely conservative. We know, for instance that some 100,000 patients are killed each year by adverse drug reactions while in the hospital.
* When I looked at more of the studies, during fact checking, I found some did use controls and presented results more uniformly positive than I had ever seen in a clinical trial. In other words, it seemed too good to be true. They were conducted by people with financial ties to the company selling the Earthing equipment.
* These aren’t treatments that magically mend broken bones or perform any other mechanical sort of repair, but treatments that change the way the patient feels—reducing pain or dispelling nausea. Asbjørn Hróbjartsson, a researcher at the Nordic Cochrane Centre, has shown in meta-analyses that the placebo does not seem to have “clinically important effects” though it does have a clear impact on pain (which, I’d argue, is clinically important) and several other conditions.
* Indeed, a body of science suggests that the positive health effects of strong social connections are as powerful as the negative effects of smoking, obesity, or a sedentary lifestyle.