BARBARA EHRENREICH: WHY I’M GIVING UP ON PREVENTATIVE CARE
HOW CONTEMPORARY AMERICAN MEDICINE IS TESTING US TO DEATH
April 9, 2018 By Barbara Ehrenreich
In the last few years I have given up on the many medical measures—cancer screenings, annual exams, Pap smears, for example—expected of a responsible person with health insurance. This was not based on any suicidal impulse. It was barely even a decision, more like an accumulation of micro-decisions: to stay at my desk and meet a deadline or show up at the primary care office and submit to the latest test to gauge my biological sustainability; to spend the afternoon in faux-cozy corporate environment of a medical facility or to go for a walk. At first I criticized myself as a slacker and procrastinator, falling behind on the simple, obvious stuff that could prolong my life. After all, this is the great promise of modern scientific medicine: You do not have to get sick and die (at least not for a while), because problems can be detected “early” when they are readily treatable. Better to catch a tumor when it’s the size of an olive than that of a cantaloupe.
I knew I was going against my own long-standing bias in favor of preventive medical care as opposed to expensive and invasive high-tech curative interventions. What could be more ridiculous than an inner-city hospital that offers a hyperbaric chamber but cannot bestir itself to get out in the neighborhood and test for lead poisoning? From a public health perspective, as well as a personal one, it makes far more sense to screen for preventable problems than to invest huge resources in the treatment of the very ill.
I also understood that I was going against the grain for my particular demographic. Most of my educated, middle-class friends had begun to double down on their health-related efforts at the onset of middle age, if not earlier. They undertook exercise or yoga regimens; they filled their calendars with upcoming medical tests and exams; they boasted about their “good” and “bad” cholesterol counts, their heart rates and blood pressure. Mostly they understood they the task of aging to be self-denial, especially in the realm of diet, where one medical fad, one study or another, condemned fat and meat, carbs, gluten, dairy, or all animal-derived products. In the health-conscious mind-set that has prevailed among the world’s affluent people for about four decades now, health is indistinguishable from virtue, tasty foods are “sinfully delicious,” while healthful foods may taste good enough to be advertised as “guilt-free.” Those seeking to compensate for a lapse undertake punitive measures like fasts, purges, or diets composed of different juices carefully sequenced throughout the day.
I had a different reaction to aging: I gradually came to realize that I was old enough to die, by which I am not suggesting that each of us bears an expiration date. There is of course no fixed age at which a person ceases to be worthy of further medical investment, whether aimed at prevention or cure. The military judges that a person is old enough to die—to put him or herself in the line of fire—at age 18. At the other end of life, many remain world leaders in their seventies or even older, without anyone questioning their need for lavish continuing testing and care. Zimbabwe’s president, Robert Mugabe, recently turned 90, and has undergone multiple treatments for prostate cancer.
If we go by newspaper obituaries, however, we notice that there is an age at which death no longer requires much explanation. Although there is no general editorial rule on these matters, it is usually sufficient when the deceased is in their seventies or older for the obituary writer to invoke “natural causes.” It is sad when anyone dies, but no one can consider the death of a septuagenarian “tragic,” and there will be no demand for an investigation.
“In the health-conscious mind-set that has prevailed among the world’s affluent people for about four decades now, health is indistinguishable from virtue.”
Once I realized I was old enough to die, I decided that I was also old enough not to incur any more suffering, annoyance, or boredom in the pursuit of a longer life. I eat well, meaning I choose foods that taste good and that will stave off hunger for as long as possible, like protein, fiber, and fats. I exercise—not because it will make me live longer but because it feels good when I do. As for medical care: I will seek help for an urgent problem, but I am no longer interested in looking for problems that remain undetectable to me. Ideally, the determination of when one is old enough to die should be a personal decision, based on a judgment of the likely benefits, if any, of medical care and—just as important at a certain age—how we choose to spend the time that remains to us.
At the same time I had always questioned whatever procedures the health care providers recommended; in fact I am part of a generation of women who insisted on their right to raise questions without having the word “uncooperative,” or worse, written into their medical records. So when a few years ago my primary care physician told me that I needed a bone density scan, I of course asked him why: What could be done if the result was positive and my bones were found to be hollowed out by age? Fortunately, he replied, there was now a drug for that. I told him I was aware of the drug, both from its full-page magazine ads as well as from articles in the media questioning its safety and efficacy. Think of the alternative, he said, which might well be, say, a hip fracture, followed by a rapid descent to the nursing home.
So I grudgingly conceded that undergoing the test, which is noninvasive and covered by my insurance, might be preferable to immobility and institutionalization. The result was a diagnosis of “osteopenia,” or thinning of the bones, a condition that might have been alarming if I hadn’t found out that it is shared by nearly all women over the age of 35. Osteopenia is, in other words, not a disease but a normal feature of aging. A little further research, all into readily available sources, revealed that routine bone scanning had been heavily promoted and even subsidized by the drug’s manufacturer. Worse, the favored medication at the time of my diagnosis has turned out to cause some of the very problems it was supposed to prevent—bone degeneration and fractures. A cynic might conclude that preventive medicine exists to transform people into raw material for a profit-hungry medical-industrial complex.
My first major defection from the required screening regimen was precipitated by a mammogram. No one likes mammography, which amounts to a brute-force effort to render the breasts transparent. First, a breast is flattened between two plates, then it is bombarded with ionizing radiation, which is, incidentally, the only environmental factor known for sure to cause breast cancer. I’d been fairly dutiful about mammograms since having been treated for breast cancer at the turn of the millennium, and now, about 10 years later, the gynecologist’s office reported that I’d had a “bad mammogram.” I spent the next few anxious weeks undergoing further tests, in the midst of which I managed to earn a ticket for “distracted driving.” Naturally I was distracted—by the looming decision of whether I would undergo debilitating cancer treatments again, or just let the disease take its course this time.
It turned out, after I’d been through a sonogram and fought panic in a coffin-like MRI tube, that the “bad mammogram” was a false positive resulting from the highly sensitive new digital forms of imaging. That was my last mammogram. Lest this seem like a reckless decision, I was supported in it by a high-end big-city oncologist, who viewed all my medical images and said that there would be no need to see me again, which I interpreted as ever again.
After this, every medical or dental encounter seemed to end in a tussle. Dentists—and I have met a number of them in my moves around the country—always wanted a fresh set of X-rays, even if the only problem was a chip in the tip of a tooth. All I could think of was the X-ray machines every shoe store had offered in my youth, through which children were encouraged to peer at the bones of their feet while wiggling their toes. The fun ended in the 1970s, when these “fluoroscopes” were eventually banned as dangerous sources of radiation. So why should I routinely expose my mouth, which is much more cancer-prone than the feet, to high annual doses of roentgens? If there was some reason to suspect underlying structural problems, okay, but just to satisfy the dentist’s curiosity or meet some abstract “standard of care”—no.
In all these encounters, I was struck by the professionals’ dismissal of my subjective reports—usually along the lines of “I feel fine”—in favor of the occult findings of their equipment. One physician, unprompted by any obvious signs or symptoms, decided to measure my lung capacity with the new handheld instrument he’d acquired for this purpose. I breathed into it, as instructed, as hard as I could, but my breath did not register on his screen. He fiddled with the instrument, looking deeply perturbed, and told me I seemed to be suffering from a pulmonary obstruction. In my defense, I argued that I do at least 30 minutes of aerobic exercise a day, not counting ordinary walking, but I was too polite to demonstrate that I was still capable of vigorous oral argument.
It was my dentist, oddly enough, who suggested, during an ordinary filling, that I be tested for sleep apnea. How a dentist got involved in what is normally the domain of ear, nose, and throat specialists, I do not know, but she recommended that the screening be done at a “sleep center,” where I would attempt to sleep while heavily wired to monitoring devices, after which I could buy the treatment from her: a terrifying skull-shaped mask that would supposedly prevent sleep apnea and definitely extinguish any last possibility of sexual activity. But when I protested that there is no evidence I suffer from this disorder—no symptoms or detectable signs—the dentist said that I just might not be aware of it, adding that it could kill me in my sleep. This, I told her, is a prospect I can live with.
“A cynic might conclude that preventive medicine exists to transform people into raw material for a profit-hungry medical-industrial complex.”
As soon as I reached the age of 50 physicians had begun to recommend—and in one case even plead—that I have a colonoscopy. As in the case of mammograms, the pressure to submit to a colonoscopy is hard to avoid. Celebrities promote them, comics snicker about them. During March, which is Colorectal Cancer Awareness Month, an eight-foot-high inflatable replica of a colon tours the country, allowing the anally curious to stroll through and inspect potentially cancerous polyps “from the inside.” But if mammography seems like a refined sort of sadism, colonoscopies mimic an actual sexual assault. First the patient is sedated—often with what is popularly known as the “date rape drug,” Versed—then a long flexible tube, bearing a camera on one end, is inserted into the rectum and all the way up through the colon. What repelled me even more than this kinky procedure was the day of fasting and laxatives that was supposed to precede it, in order to ensure that the little camera encounters something other than feces. I put this off from year to year, until I finally felt safe in the knowledge that since colon cancer is usually slow-growing, any cancerous polyps I contain are unlikely to flourish until I am already close to death from other causes.
Then my internist, the chief physician in a midsized group practice, sent out a letter announcing that he was suspending his ordinary practice in order to offer a new level of “concierge care” for those willing to cough up an extra $1,500 a year beyond what they already pay for insurance. The elite care would include 24-hour access to the doctor, leisurely visits, and, the letter promised, all kinds of tests and screenings in addition to the routine ones. This is when my decision crystallized: I made an appointment and told him face-to-face that, one, I was dismayed by his willingness to drop his less-than-affluent patients, who appeared to make up much of the waiting room population. And, two, I didn’t want more tests; I wanted a doctor who could _protect _me from unnecessary procedures. I would remain with the masses of ordinary, haphazardly screened patients.
Of course all this unnecessary screening and testing happens because doctors order it, but there is a growing rebellion within the medical profession. Over-diagnosis is beginning to be recognized as a public health problem, and is sometimes referred to as an “epidemic.” It is an appropriate subject for international medical conferences and evidence-laden books like Overdiagnosed: Making People Sick in the _Pursuit of Health _by H. Gilbert Welch and his Dartmouth colleagues Lisa Schwartz and Steve Woloshin. Even health columnist Jane Brody, long a cheerleader for standard preventive care, now recommends that we think twice before undergoing what were once routine screening procedures. Physician and blogger John M. Mandrola advises straightforwardly:
Rather than being fearful of not detecting disease, both patients and doctors should fear healthcare. The best way to avoid medical errors is to avoid medical care. The default should be: I am well. The way to stay that way is to keep making good choices—not to have my doctor look for problems.
With age, the cost/benefit analysis shifts. On the one hand, health care becomes more affordable—for Americans, anyway—at age 65, when a person is eligible for Medicare. Exhortations to undergo screenings and tests continue, with loved ones joining the chorus. But in my case, the appetite for medical interactions of any kind wanes with each passing week. Suppose that preventive care uncovered some condition that would require agonizing treatments or sacrifices on my part—disfiguring surgery, radiation, drastic lifestyle limitations. Maybe these measures would add years to my life, but it would be a painful and depleted life that they prolonged.
As it is now, preventive medicine often extends to the end of life: 75-year-olds are encouraged to undergo mammography; people already in the grip of one terminal disease may be subjected to screenings for others. At a medical meeting, someone reported that a 100-year-old woman had just had her first mammogram, causing the audience to break into a “loud cheer.”
One reason for the compulsive urge to test and screen and monitor is profit, and this is especially true in the United States, with its heavily private and often for-profit health system. How is a doctor—or hospital or drug company—to make money from essentially healthy patients? By subjecting them to tests and examinations that, in sufficient quantity, are bound to detect something wrong or at least worthy of follow-up. Gilbert and his coauthors offer a vivid analogy, borrowed from an expert in fractal geometry: “How many islands surround Britain’s coasts?” The answer of course depends on the resolution of the map you are using, as well as how you are defining an “island.” With high-resolution technologies like CT scans, the detection of tiny abnormalities is almost inevitable, leading to ever more tests, prescriptions, and doctor visits. And the tendency to over-test is amplified when the doctor who recommends the tests has a financial interest in the screening or imaging facility that he or she refers people to.
It’s not only a profit-hungry medical system that drives over-testing and over-diagnosis. Individual consumers, that is, former and potential patients, may demand the testing and even threaten a malpractice suit if they feel it is being withheld. In the last couple of decades, “patient advocacy” groups have sprung up to “brand” dozens of diseases and publicize the need for screening. Many have their own celebrity spokespersons—Katie Couric for colonoectal cancer, Rudy Giuliani for prostate cancer—and each sports its own distinctive colored ribbon—pink for breast cancer, purple for testicular cancer, black for melanoma, a “puzzle pattern” for autism, and so on—as well as special days or months for concentrated publicity and lobbying efforts. The goal of all this is generally “awareness,” meaning a willingness to undergo the appropriate screening, such as mammograms and PSA tests.
“The tendency to over-test is amplified when the doctor who recommends the tests has a financial interest in the screening or imaging facility that he or she refers people to.”
There are even sizable constituencies for discredited tests. When the US Preventive Services Task Force decided to withdraw its recommendation of routine mammograms for women under 50, even some feminist women’s health organizations, which I had expected to be more critical of conventional medical practices, spoke out in protest. A small band of women, identifying themselves as survivors of breast cancer, demonstrated on a highway outside the task force’s office, as if demanding that their breasts be squeezed. In 2008, the same task force gave PSA testing a grade of “D,” but advocates like Giuliani, who insisted that the test had saved his life, continued to press for it, as do most physicians.
Many physicians justify tests of dubious value by the “peace of mind” they supposedly confer— except of course on those who receive false positive results. Thyroid cancer is particularly vulnerable to over-diagnosis. With the introduction of more high-powered imaging techniques, doctors were able to detect many more tiny lumps in people’s necks and surgically remove them, whether surgery was warranted or not. An estimated 70 to 80 percent of thyroid cancer surgeries performed on US, French, and Italian women in the first decade of the 21st century are now judged to have been unnecessary. In South Korea, where doctors were especially conscientious about thyroid screening, the number rose to 90 percent (Men were also over-diagnosed, but in far lower numbers.) Patients pay a price for these surgeries, including a lifelong dependence on thyroid hormones, and since these are not always fully effective, the patient may be left chronically “depressed and sluggish.”
So far I can detect no stirrings of popular revolt against the regime of unnecessary and often harmful medical screening. Hardly anyone admits to personally rejecting tests, and one who did—science writer John Horgan in a _Scientific American _blog on why he will not undergo a colonoscopy—somewhat undercut his well-reasoned argument by describing himself as an “anti-testing nut.” Most people joke about the distastefulness of the recommended procedures, while gamely submitting to whatever is expected of them.
But there’s a significant rebellion brewing on another front. Increasingly, we read laments about the “medicalization of dying,” usually focused on a formerly frisky parent or grandparent who had made clear her request for a natural, nonmedical death, only to end up tethered by cables and tubes to an ICU bed. Physicians see this all the time—witty people silenced by ventilators, the fastidious rendered incontinent—and some are determined not to let the same thing happen to themselves. They may refuse care, knowing that it is more likely to lead to disability than health, like the orthopedist who upon receiving a diagnosis of pancreatic cancer immediately closed down his practice and went home to die in relative comfort and peace. A few physicians are more decisively proactive, and have themselves tattooed “NO CODE” or “DNR,” meaning “do not resuscitate.” They reject the same drastic end-of-life measures that they routinely inflict on their patients.
In giving up on preventive care, I’m just taking this line of thinking a step further: Not only do I reject the torment of a medicalized death, but I refuse to accept a medicalized life, and my determination only deepens with age. As the time that remains to me shrinks, each month and day becomes too precious to spend in windowless waiting rooms and under the cold scrutiny of machines. Being old enough to die is an achievement, not a defeat, and the freedom it brings is worth celebrating.
From Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer. Used with permission of Twelve Books. Copyright © 2018 by Barbara Ehrenreich.