“It’s really hard to accept the limits of modern medicine,” observes Dr. Val Jones. “We can’t cure every disease, we can’t effectively treat every symptom, and we can’t prevent death indefinitely. It’s human nature to want to control our destinies, to reject the cards we’ve been dealt. In that sense I have the utmost sympathy for people who choose to turn over every treatment stone in the face of a daunting diagnosis, or when they are suffering from disease.” However, when we are sick we are at our most vulnerable, and she sees companies preying on that vulnerability by offering false hope—often in the form of expensive treatments. “They know that we’ll do anything when we’re suffering, including buying into a carefully constructed fantasy (often couched in ‘medical-sounding’ jargon). Peddling fake medicine to sick people is morally unjustifiable,” she says. Opportunists have always been around; now, their presence is that much more intrusive—they’re in our in-boxes, they pop up in our Web browsers, and they approach us in sympathetic ways. It’s easy to spot the true charlatans, those peddling the gimmicks. More complex issues arise for patients and providers when it’s a difference of evidence and interpretation, not some fraudulent scam, and this is where the idea of informed choice really factors.
It’s all about the validity of the information, Barbara Kivowitz reminds us. When a patient is newly diagnosed, desperate or scared, or has exhausted all treatment options without finding relief, she admits, it is very easy to be swayed by personality, rather than by accuracy. “As much as we search for answers, we have to accept that the sands are always shifting and what we are doing and what we are told today might be different five years from now … [The] seeker needs to put quotation marks around the truth and keep seeking and be one’s own research validator and see what repeats and what appears to be credible based on common sense,” she says. When her pain was out of control, she fell susceptible to the claims of a doctor she found online who said his approach worked, and that the only reason the medical community didn’t accept it was because it cost so much less. As her regular physician pointed out, wouldn’t other professionals know about it and do research if this person really had found a cure? She learned a valuable lesson about the importance of aggregating sources and looking at the issue through multiple lenses. In her case, this included conventional medicine, trusted medical sources, as well as complementary and alternative medicine.
For patients with chronic illness, complementary and alternative medicine (CAM) is a particularly relevant example of the competition between what we want from medicine and what the evidence at hand can give us in terms of informed choice. CAM is a set of diverse practices and treatments that are grouped into broad categories that include natural products like herbal supplements; mind-body practices like meditation, acupuncture, and yoga; body manipulation and body-based practices like massage; and energy-based practices like reiki, which is a therapeutic touch technique. For millions of Americans, especially those living with chronic pain, CAM is a popular choice and has made a difference in quality of life. Some patients count their physicians as supportive of their choice to practice CAM, even if so far the science does not support its safety or effectiveness. For others, it’s not something they are willing to disclose to their physician, eliminating the opportunity for collaboration. It is undoubtedly a lucrative business; each year, Americans spend nearly $21 billion in nutritional supplements alone.9
Janet Geddis, the woman living with debilitating migraines, practices CAM and makes conscious diet and lifestyle choices that are a regular part of her disease maintenance. She takes daily supplements and practices yoga, tai chi, and mindful meditation. Her complementary care physician recommended a smoothie recipe customized for her particular health needs that she makes every day, and she tries to incorporate regular exercise, like walking, several times a week. She has “dabbled” in CAM for a long time, but has been a devotee for two and a half years. She needs and uses her conventional Western treatments to help when she senses a migraine is imminent—specifically, a triptan drug, designed to help abort migraine attacks—but her supplements, smoothies, and activities help keep her whole system in equilibrium, which she says leads to fewer migraine attacks and pain flare-ups. When the triptans have done their best but the migraines still grab hold of her and won’t let go, she has rescue medicines (narcotics) that help with the pain but don’t necessarily do much for the debilitating side effects, such as dizziness, nausea, and photophobia.
In December 2008, the National Center for Complementary and Alternative Medicine (NCCAM) and the National Center for Health Statistics (part of the Centers for Disease Control and Prevention) released findings on Americans’ use of CAM. The data suggests that experiences like Geddis’s and of many other patients living with chronic pain and illness are more common than one might think. For example, in 2007, nearly four out of ten American adults (38 percent) reported having used some form of CAM in the previous twelve months. The CAM therapies they had most commonly used were non-vitamin and non-mineral natural products such as fish oil, glucosamine, flaxseed oil, and ginseng; deep breathing exercises; meditation; chiropractic or osteopathic manipulation; massage; and yoga.10 CAM use as detailed in the 2007 survey was more prevalent among women, adults aged thirty to sixty-nine, adults with higher levels of education, adults who were not poor, former smokers, and adults who had been hospitalized in the previous year. Of note, the period between 2002 and 2007 also saw numerous positive articles about CAM in the popular press, as well as an increase in the number of licensed practitioners. As such, more awareness coupled with more opportunity may help explain the growing popularity of CAM.11
Do I think acupuncture, reiki, or other practices will conjure up working cilia for me? Obviously not. Do I think they can cure what ails patients with chronic conditions? No, but I don’t think that’s the expectation most people have when they try CAM. Usually, they are trying to help treat their symptoms—their pain, inflammation, or fatigue, for example—not cure the precipitating condition altogether. In fact, research shows that in 2007, the most common conditions people used CAM to help treat included back pain, head/chest colds, neck and joint pain, arthritis, and anxiety/depression.12 There are boundaries to what science can do in terms of understanding, treating, and eliminating pain, and the “complementary” aspect of CAM refers to those patients who use it in conjunction with conventional treatment, such as prescription drugs. Often, it’s when those drugs have reached the end of their usefulness that patients seek out treatments that are beyond the pale of Western medicine.
Roy Porter contends that this upswing in CAM shows that regular medicine is no longer convincing in its role as the best means to cure patients, and that promises made about lethal diseases and the numerous intractable chronic conditions we live with have not been delivered. In the post–World War Two era of irresistible progress, people began to expect that we were just a breath away from conquering so much of what ailed us. We’ve lost that naïveté and that arrogance, and, in some instances, perhaps at the expense of our trust in the medical establishment. What’s more, we live in a society that increasingly values choice and self-assertiveness, which translates into how we approach medical problems. Porter writes, “Affluence, education, leisure and any of the values promoted by corporate capitalism have stoked a culture of individual enhancement and free and active choice. As with cars, careers or sexual partners, it has become the done thing to shop around for healing—whether in desperation, as an exercise of the power of the purse, or as part of an odyssey of life.”13
An integrative model of health, in which the mind, body, spirit, and even community are key components of health, is indeed popular in today’s wellness lexicon. The focus is on treating the whole person, rather than managing symptoms, and in that respect, it is both progressive as well as a throwback to more ancient notions of healing. The growing popularity of mind-body practices is a testament to the fact that for many patients, the biomedical model of illness upon which con
ventional medicine relies comes up short. Top research hospitals and institutions are starting to operate mind-body and CAM clinics, and under the auspices of the National Institutes of Health, NCCAM is the federal government’s primary agency dedicated to researching practices beyond the scope of conventional medicine.14 Since 1999, the number of medical schools that have joined the Consortium of Academic Health Centers for Integrative Medicine, an organization that helps schools incorporate education on CAM, has risen from eight to fifty.15
While the NCCAM may give legitimacy and validation to those who believe CAM works and are hopeful the science will soon follow to prove this, that position is not uniformly accepted. Proponents of evidence-based medicine have taken to blogs and online media to echo their concerns. Writing for Science-Based Medicine, Dr. Steven Novella contends that the CAM and integrative labels are at once both marketing attempts to rebrand as medicine what fails to meet the usual criteria for it, as well as more damaging attempts to create a separate standard of scientific research. He writes, “People who are being studied tend to take better care of themselves and are more compliant with treatments (because they are being watched). They may also feel better as a result of the positive attention from a health care provider—old-fashioned good bedside manner. These are some of the variables being controlled for. But it is scientifically absurd to argue that they justify an ineffective treatment. But that is exactly what CAM proponents are doing.”16
Against this backdrop, it is not surprising to see that 61 percent of Americans don’t feel they can discuss their use of CAM with their physicians, and the majority of physicians don’t inquire about supplements or CAM practices their patients might be using.17 On many levels, this distance is damaging. For one, patients face potential risk of drug interactions, but it is the quality and integrity of the relationship itself that suffers when patients feel they cannot be open and physicians are not aware of this whole other aspect of patients’ lives.
The distinction is not about degrees with evidence-based medicine—it is about the science. Out of forty systematic reviews of acupuncture, massage, naturopathy, and yoga published between 2002 and 2007 in PubMed, the National Library of Medicine’s research database, ten articles (25 percent) found sufficient evidence to conclude that a specific CAM therapy was effective in treating a specific condition. Acupuncture and yoga were found to help back pain, and acupuncture was effective for patients with knee pain, insomnia, and nausea/vomiting (and that includes patients who were postoperative, receiving chemotherapy, or were pregnant).18
“So the bottom line is this: wanting to fight against disease is a good thing. But the most important battles are won with science. Compassion and kindness are part of good medical care—and CAM is usually no more than an expensive distraction from real cures or acceptance of our physical situations,” Dr. Jones says.
Despite that, patients continue to choose CAM and find positives in it. Part of what makes Janet Geddis’s mind-body integration so productive is that both her CAM practitioner and her primary care physician are knowledgeable and supportive of the other’s perspective—there is no “us versus them” mentality in a collaborative situation like this.
“One thing that surprised me most about my CAM health care provider was how he isn’t judgmental at all regarding so-called ‘Western’ medicine. He recognizes that my prescription triptan drugs help me cope with migraine attacks and has never asked me to go off my prescription medications. He has a fairly strong knowledge of so-called traditional medicinal approaches and doesn’t tend to frown upon them, as I’d expected,” she says. “My primary care physician is, to my happiness, really supportive of the care I receive from the hospital’s Mind-Body Institute and is good at making sure that her recommendations complement my CAM doctor’s recommendations. Having doctors respect each other—even if they only know of each other through me—makes things so much smoother.”
Remember too that for many patients, the decision to try out CAM techniques comes after a long, frustrating trial-and-error existence within the confines of conventional medicine. When nothing else has worked, there is much less to risk losing, especially when relief is nowhere to be found. That is why CAM is so appealing to the millions of people living with constant pain and ongoing symptoms. Those who have implemented some type of alternative treatment usually aren’t trying to buck the conventional medical system or take a stand against evidence-based medicine. They aren’t trying to make an ideological point, they aren’t trying to be contrary, difficult, or any other characteristics that might be lobbed at them from those who doubt the value of CAM. They want to feel better, and they will exhaust every option available to them in search of that relief.
Barbara Kivowitz uses a combination of CAM methods to help manage her chronic pain. She feels the advent of CAM’s popularity is symptomatic of a larger social and political question: Should medicine be strictly evidence-based or designer medicine for individual patients? For patients with complex chronic conditions, the notion that every case is really a case of one is that much more relevant. Obviously the medical establishment and the research it conducts rely on the integrity of evidence-based medicine, as do so many patients with disease, particularly clear-cut ones. But for those for whom the evidence-based treatments are not working, and for those whose problems stretch beyond what we can identify, looking outside of what is conventional is often born out of necessity. The battle over science will continue, but for now patients who make the informed decision to implement CAM and the physicians who manage their conditions share a burden of disclosure and communication. In that way, CAM is but the latest iteration of a much larger pattern of responsibility and decision making.
We are at an interesting crossroads. We know more about disease than ever before and as patients, we have access to more health information than at any point in human history. At the same time, there are so many competing agendas that threaten to get in the way of collaboration. The progress that has given us fewer invasive surgeries, more accurate diagnostic tests and refined therapies, and protection against communicable disease has raised our expectations. In Better than Well, Carl Elliott observes that we turn to and depend on technology to fix our inconveniences and dissatisfactions, even if it isn’t always the appropriate solution.19 While we profess to enjoy competitive sports, Elliott considers, it is important that we win the game, so performance-enhancing drugs become more popular. We want to look good so others will both notice and emulate us, so the use of cosmetic surgery and other enhancement techniques increases. Thanks to technology, many of us have become accustomed to immediate answers and results, and often we expect our bodies and the care and management of them to follow suit. Chronic illness—its lingering symptoms, its diagnostic subterfuges, its frequent defiance of data and easy answers—challenges this worldview. Not only that, it sometimes removes us from the competition altogether.
So are we better or worse off for the resources we have at our disposal? For patients like me who likely wouldn’t be alive or would have significantly shorter life spans and more suffering without technology, at the most basic level, it’s not a question that merits too much consideration. Survival wins. But if we move past fundamental issues of mortality and morbidity, when we ask ourselves whether all the resources we have within reach actually bring us more relief, satisfaction, or qualitatively better interactions and communications, the answer isn’t so black and white.
“I think we like to mythologize previous generations, as if they were somehow better—tougher, perhaps—for not having had various technologies and treatments available. I can think of maybe a few instances, but in general I think this is greatly overstated,” says Duncan Cross. As an example he uses depression, a condition that typically went untreated in previous generations. “Now we have lots of pills that we can take, and to some extent this has encouraged us to view as pathologies what are in fact some very normal moods and feelings. But the fact is, previous generations were no better o
ff for untreated depression. I know that in my family, there were a few people who were probably exactly that—depressed and untreated. They might have been tougher at some level, but they weren’t better people for being untreated,” he says.
Cross mentions depression for good reason. One out of every ten Americans takes an antidepressant, and we have seen a doubling of patients seeking prescription medication for depression between 1996 and 2005.20 The numbers are a revealing look into the cultural mood we find ourselves in. In an essay for Salon, Charles Barber, a lecturer in psychiatry at Yale, says that right now, there is “a high-water mark of worry and suffering on numerous fronts—economic, of course, but also social, with our ever-increasing isolation and Internet-driven loss of human connection and the ongoing trauma of wars and crises that just don’t seem to end.”21 Part of the reason is what Barber mentions—economic stress, alienation, feeling disconnected from each other and from our physicians. But part of the reason is that in the midst of our fears and vulnerabilities we are inundated with persuasive advertisements for a whole host of drugs, including many for depression, anxiety, and other mental health conditions.
One of the most obvious marks of the consumer society in which we live is not simply the abundance of prescription drugs, but the direct-to-consumer (DTC) advertising of them. They are almost exclusively targeted toward people with chronic health conditions. Think about how many heart patients take cholesterol-lowering statins, how many asthmatics rely on inhalers for daily maintenance and rescue situations, or how many watery-eyed allergic adults reach for antihistamines and nasal spray. Consider how much money that translates into for the companies that produce these medicines. We spend a whopping $250 billion annually on prescription drugs. They are the fastest growing medical expenditure, and it is not just because more people are taking prescriptions. The drugs we take are more likely to be newer and more expensive—the same ones we see on television and splashed across magazines—than older, cheaper (but otherwise effective) drugs, and the prices of many heavily prescribed drugs are frequently raised.22 Not coincidentally, total spending on pharmaceutical promotion grew from $11.4 billion in 1996 (when DTC advertising became legal) to $29.9 billion in 2005. During that time, spending on DTC advertising increased by 330 percent, making up 14 percent of total promotional expenditures in 2005.23
In the Kingdom of the Sick: A Social History of Chronic Illness in America Page 20