by Steven Hatch
What the reviewers found is that these critical ingredients for context were often missing. A representative sample can be found in a review of an article published in US News & World Report in 2007. Titled “To Build a Knee,” the article is a poetic paean to the magic of the computerized “motion analysis laboratory” and the role it plays in helping orthopedists decide on what measures to take, up to and including knee replacement, which the article highlights in the best possible terms. “Knee replacement can bring an end to years of crippling pain. ‘Ninety-five percent of the people I treat feel much better after having surgery. How great is that?’” asked Dr. Stephen Haas, the chief of the knee service at the Hospital for Special Surgery in New York City.
This is a classic entry in the category of “good story” on health care, one in which doctors appear to be miracle makers, and their work, the work of angels. How great is that? On the one hand, it is great, and knee replacement really can bring an end to years of crippling pain. But the job of a health news piece is to give context: When can surgery have that miraculous effect? Moreover, its job is to include caveats: How often do things go wrong? Is Dr. Haas’s claim of major improvement in 95 percent of his patients really accurate? Can someone else out there verify that claim? And what happens to the 5 percent who don’t improve? Do they just not improve, or do they have complications, and if so, what are they? And, by the way, how much does a knee replacement cost?
Answering those questions is what good health reports do on a daily basis rather than making medicine sound like an advertisement, and HealthNewsReview found this particular news piece wanting. “Total knee replacement is but one treatment that . . . yields often remarkable results,” the review noted, echoing the sentiments of the article. Then came the caveat: “Despite its good reputation though, there’s more to the operation than this article’s glancing overview suggests. For starters, knee replacement is a major surgery with potentially important complications, including blood clots in a leg or lung, infections, and (rarely) death.” Of the ten criteria that HealthNewsReview uses, one—whether the story appeared to be a rewritten version of a press release—was not considered applicable. Of the remaining nine that were graded, seven were considered to be unsatisfactory and reflect the kinds of concerns raised by my questions above. The reviewers thought that the story did establish the general availability of the procedure and explained its novelty, which is not altogether surprising because the inclusion of these items in the story serves only to portray knee replacement in a good light.
It’s not that what US News & World Report published was false, but the silence on the caveats ultimately lead to a false impression: It’s safe! It’s great! Look at the neat computer lab! Everyone’s doing it! Should patients do due diligence when researching options for chronic knee pain, which includes finding out the answers to the kinds of questions that I’ve posed? Why yes, of course they should. But isn’t that the reason we have news organizations like US News & World Report? Shouldn’t they be the first line in helping patients understand the risks and benefits of a treatment? And if the reporters who write puff pieces like “To Build a Knee” don’t think it’s their obligation to include this level of cautionary detail, then whom precisely do they think they’re working for?
Not only did Schwitzer and his colleagues take this message to the masses at the website, but he communicated this information to the very professionals being covered by this news. Writing in the scientific journal PLoS Medicine in 2008, Schwitzer analyzed five hundred stories that HealthNewsReview had evaluated. Using the ten categories, Schwitzer presented data that should be considered alarming by anyone who thinks that patients aren’t getting the proper context in health news, well before they’ve ever stepped foot in a doctor’s office to have a discussion. What were the categories most consistently missed? Several of them are those that, when excluded from a news story, can give people warped perceptions about how much uncertainty surrounds the subject, similar to what I have illustrated in this chapter. Only about a third of these articles quantified either benefits or harms, and only a very slightly higher percentage (35 percent) discussed the quality of evidence in a medical news story. Only half of the news stories sought independent sources or explored whether the people touting some medical treatment technology had a financial conflict of interest. The categories where news stories did best was exactly the categories the “To Build a Knee” story nailed, and they were also not uncoincidentally the most self-serving: 70 percent of stories highlighted the availability of new medical approaches, and 85 percent of stories established the true novelty of the new approach.
But perhaps the most chilling statistic is that 65 percent of news stories went “beyond a news release.” That means that one out of every three news stories is just the regurgitated offerings of a public relations department from some university, doctors’ office, or drug or device company. It is safe to say that lightly amended versions of press releases generated by these groups aren’t going to give consumers critical information that might paint a more nuanced picture of their promise, yet every third story to be found on the major media websites as of the mid-2000s did just this.
When HealthNewsReview came bounding onto the US scene, it was greeted by the medical and the media establishment in two very different ways.* The first was overwhelming praise. The year the website was launched, it received the Knight-Batten Award for innovations in journalism from the group J-Lab, a center of American University’s School of Communication. The following year it received a Mirror Award from Syracuse University’s Newhouse School of Public Communications, and a few years later it won the title of Best Medical Blog from the website Medgadget.com. The Columbia Journalism Review lauded its mission in a news item in 2011. Among medical scientists, the journal PLoS Medicine published Schwitzer’s analysis with an editorial praising his work, saying that his “alarming report card of the trouble with medical news stories is thus a wake-up call for all of us involved in disseminating health research . . . to work collaboratively to improve the standards of health reporting.”
HealthNewsReview.org was modeled after a website in Australia called Media Doctor, the true trailblazer in the field.
The second reaction was, it appears, more important to the lifeblood of HealthNewsReview. That reaction was not one, as one might think, of overt hostility. Rather, it was one of indifference: the multibillion dollar media conglomerates that were, consciously or not, complicit with Big Medicine in foisting fluff on a less-than-ideally educated public did not respond in defensive outrage. For the most part, they didn’t respond at all, acting as if none of this critique was actually taking place. Whether they were even aware of HealthNewsReview’s mission—which ultimately was not to throw spitballs at the media but rather to provide feedback to enable the media to do its job better—is not completely clear. The media tool kit provided by the website, which includes a set of tips for journalists to interpret how studies are done and how to understand the impact of their findings, in addition to a list of independent experts to help journalists with their stories, wasn’t apparently useful enough to the major organizations to figure out a mechanism to keep a resource like this sustained. For in July 2013, after about seven years inhabiting cyberspace, HealthNewsReview, like the Australian website Media Doctor on which it was based, lost its funding—though read on to the next chapter for an update.
Meanwhile, the band keeps playing a happy tune.
Full Circle
This may seem like a particularly unpleasant note on which to complete our survey before we draw final conclusions. The message that the media ignores its own best advisors, and routinely misrepresents health stories by avoiding discussing how much uncertainty exists on a given topic, leaves one wondering how it might be possible to change such a nonresponsive structure. After all, we can’t all become reporters, to say nothing of statisticians or scientists, and simply perform the research on all of these topics firsthand. We need media to supply
us with accurate and contextualized information. Short of becoming a chief of a health news division, how do we change the system?
We don’t, of course, because almost no single person is capable of doing this, even with all the best training in the world. Instead, we do something much more profound and empowering: we change ourselves. Simply by understanding uncertainty, we become more able to find the gaps and overstatements in a news story. The more we focus on the “how” of uncertainty, the better we become at carrying around a little, internalized HealthNewsReview in our brains. That allows us to change the dynamic from a monologue, where we passively receive the news, into a dialogue, where we actively engage with it. In short, we turn news consumption into a two-way street.
Changing ourselves, and changing how we interact with the medical system, is the basis for a healthier and more fulfilling experience as a patient. Understanding uncertainty is liberating rather than oppressive, and it allows us to utilize the dialogue model not only when we read a health news tidbit, but when we sit in the office and face a doctor with decades of training. How to incorporate this powerful tool is how I’ll conclude the book.
9
CONCLUSION: THE CONVERSATION
Everybody talks, but there is no conversation.
—DEJAN STOJANOVIĆ
Just Trust Us
Where does one go from here? Or, to phrase the question somewhat differently: What is the practical value of investigating the limits of what we know in medicine? One cannot, for instance, assume that patients and their families will become experts on the topics covered thus far, sifting through the technical literature so that specialist advice becomes unnecessary. We can’t expect people to become steeped in the data and commentary on mammography recommendations, the guidelines for cholesterol management, the limitations of Lyme testing, and so on for every conceivable medical issue that they or their loved ones might encounter. There are simply too many issues, each with its own particular oddities and refinements, for one person to assimilate. Of course, this is the point of having physicians in the room. They are a structural short-circuit for patients: trained professionals who are there precisely to relieve patients and families of the burden of mastering all the relevant studies in order to make reasoned decisions.
One of the implicit goals of this book has been to offer a new vision of medicine, one where the roles of doctor and patient are significantly redefined. At least in my model of medicine, patients should be the masters of their care, and doctors should be advisors—trusted advisors, one hopes, but advisors nonetheless. Yet doctors should not be expected to simply decree the major elements of a medical plan for a patient.* Along with many other colleagues, I conceive of the role of physician as a guide to the perplexed instead of a general commanding troops in a war against disease. Part of the reason sometimes there is a disconnect between patients and their doctors is that each party may be operating under different assumptions about which of these two different patient/doctor models is the more appropriate one.
The philosophy underpinning this model of medicine is beyond the scope of this book (note to publisher: I have more material for another book!), but it is worth emphasizing that supporting patient autonomy doesn’t mean that one expects patients to decide on every minor adjustment to a medical plan. In discussing these meaty matters with colleagues and students, occasionally someone defending an older, more paternalistic model will get a bit too cute and wonder aloud the wisdom of letting a patient decide whether to adjust the potassium level during an inpatient hospitalization, for instance. That’s not the kind of decision making to which I am referring. But paternalism still has its defenders: Sandeep Jauhar, a physician and sometime essayist for the New York Times whom I admire, wrote about the case for what he called “hard paternalism” in an op-ed in 2014 titled “When Doctors Need to Lie,” which was a piece that I didn’t admire so much.
Yet if patients should be the captains on their own ships of life, as it were, then what do we expect them to do in the kinds of situations I have outlined in this book, where often even experts disagree? Wouldn’t this justify an older, more paternalistic model in which doctors decided and patients “complied” with their judgment? That model, whose boiled-down message could be summarized as just trust us, may be the most useful because it can alleviate most of the anxieties surrounding patient decision making.
I think not. I think that the older style infantilizes patients and leaves doctors feeling as if they are engaged in some supernatural process, far beyond the talents of mere mortals. I think it reinforces the kind of hubris that we have seen over and over again in example after example in this book, where doctors place too much confidence in their judgment and in the technology they utilize. As I tried to show, the results of that system can on occasion be disastrous.
Thus, we need to imagine a new model, one based on the strengths that both the doctor and the patient possess when they encounter one another, for the clinical proficiency of the physician is only one kind of strength in medical decision making, yet we have taken it to represent the whole. I would submit that a much more powerful model is that of a conversation between the two parties, on equal footing but each with a special area of expertise without which any medical plan is incomplete.
How can such a conversation take place? And what should be expected of each party in this conversation vis-à-vis uncertainty? Let’s break down each role separately.
For doctors, the most important adjustment that is required is to acknowledge the potentially lifesaving benefits of humility. This means that doctors should nearly always be circumspect when talking about their judgment, either with respect to a diagnosis, a prognosis, or a treatment plan. It doesn’t mean not having an opinion, but it does mean that such opinions are constrained by the limitations of what is known about a particular subject, and how those constraints affect the risks of taking action versus doing nothing.
For instance, in the Introduction to the book, we looked at cancer prognosis: once upon a time, oncologists used to offer prognoses to patients. They had developed a variety of scales that predicted how many years or months a patient might have to live. These scales were built in part on complex staging information of the cancer, combined with various laboratory values that indicated how advanced a patient’s disease was. They would tailor their treatment recommendations based on how long they thought a patient with a terminal cancer would have to live.
But, as I discussed, once researchers started studying this in detail, they found that oncologists were unable to make accurate prognoses. When their ability to predict was put to the test, they failed fairly profoundly. So, instead of burying their heads in the sand and retreating from the implications of this fairly humbling revelation, oncologists made two important adjustments. First, and most important, they got out of the prognosis business. That’s not to say they stopped talking about survival odds and the data on groups of patients with a particular stage of cancer, for indeed a patient with a glioblastoma multiforme (a highly aggressive brain cancer) is much more likely to have a shorter time to live than a patient with a hormone-responsive prostate cancer caught at an early stage. But they stopped offering specific guesses for how long a given individual had to live.
Second, they created a much more simplistic scoring system to guide their recommendations for therapy. This four-point score doesn’t take into account the dozens of variables used in staging a cancer, but instead looks at patients’ general state of health and their ability to perform the kinds of daily tasks that healthy individuals do as a matter of course (like brushing their hair, bathing, and dressing themselves).* On these basic criteria alone, oncologists can make recommendations to their patients about treatment, precisely because they do not know with complete certainty which patients are likely to respond to chemotherapy or radiation and which are not. Therefore, they simply look at who is functionally strong enough to tolerate the side effects—one might use the word “ravages”—of these treatme
nts. It is a much better and more useful model, one that incorporates uncertainty into its bones. And it rests on the premise that doctors simply cannot provide the kind of confident predictions that are often expected of them or that they may expect of themselves.
Technically, five: the fifth “score” is death.
Humility is the cornerstone of this approach. It requires saying the words I don’t know without moving immediately into a defensive crouch—indeed, it requires the acknowledgment that I don’t know often reflects the status of some medical topic, even though much may be known about it. It calls for not talking at but listening to patients and families, and making a real attempt to understand their goals, especially in the setting of long-term or terminal disease. To do this, physicians have to ask questions, gently probing to make sure that both parties are on the same page, and locating themselves in roughly the same portion of the spectrum of certainty.
For patients, the conversation requires asking questions, lots of questions, about not only the benefits but the risks of treatment, and the consequences of declining to be treated for something. Sometimes those consequences are quite profound, and patients should develop a framework for understanding when a doctor’s recommendation is strong and not so strong. And if the doctor’s recommendations about everything is strong, and no explanations are offered about why this is so, it’s probably time to find another doctor. If you’re feeling bullied, you’re being bullied.