Summary: Don Berwick, who will soon become the head of the Centers for Medicare and Medicaid, has declared himself an “extremist” insofar as he is a passionate advocate of “patient-centered care.” Earlier this week, Ezra Klein used the declaration to make a provocative argument that Don Berwick is, in fact, a conservative. Congressional right-wingers should be happy, even if they don’t know it yet.
There is much to like about Klein’s argument, though in the end I have to disagree. There is an enormous difference between “consumer-driven medicine” which appeals to conservative free marketers, and “patient-centered medicine” grounded in the more liberal idea of shared decision-making. Ultimately, patient-centered medicine is about sharing information. It’s also about respect and empathy. Ideally ,Berwick says, medical decisions should be based on medical evidence, but, after discussion, physicians should yield to an individual patient’s preferences, and his right to choose what happens to his own body, even if that means that he doesn’t “comply” with the doctors’ recommendations.
If we accede to patients’ wishes, won’t that mean that they’ll bankrupt the system? No, Berwick observes, experience suggests that informed patients are likely to want less care, not more.
In an essay titled “What “Patient Centered” Should Mean: Confessions of an Extremist,” published in Health Affairs online, earlier this spring, Dr. Donald Berwick, the newly appointed director of the Centers for Medicare and Medicaid (CMS), argues that in a patient-centered practice “the needs and wants of the patient should come first.”
Anticipating criticism, he asks a provocative question: "Should patient ‘wants’ override professional judgment about whether an MRI is needed?" he asks. "My answer is, basically, 'Yes.'”
Earlier this week, the Washington Post’s Ezra Klein quoted these lines to argue that conservatives should be happy that Berwick will be taking the top post at CMS: Berwick is actually one of them:
“Insofar as Berwick is a radical, he's a radical in believing that vastly more power has to be devolved to the judgments, preferences and desires of patients.” Klein wrote, and again quotes the Harvard pediatrician: “An overarching aim for an ideal practice [is] that its patients would say of it, 'They give me exactly the help I need and want exactly when I need and want it.'”
“This view is traditionally associated with conservatives, not liberals, Klein added. “Liberals tend to believe that the doctor is, and should be, the primary decision maker, and so the way to reduce costs across the health-care system is to change the doctor's incentives, give her more information about the efficacy of treatments, give her fewer financial incentives to err on the side of expensive interventions rather than watchful waiting.”
But Klein continued, “Berwick doesn't agree. He believes the focus should be on giving the patient the information, incentives and ability to make their own decisions in consultation with their doctor.”
Klein then comes to Berwick’s question about whether the patient’s desire for an MRI should override professional judgment, and concludes that “Berwick is something of a bulwark against the sort of rationing conservatives fear. He wants patients elevated above either government or providers. . . . Conservatives have scored a big win here, even if they don't know it yet.”
What Will Conservatives Make Of This?
What I like about Klein’s argument is that it follows one of the first rules of combat: “Confuse your enemies.” Make no mistake, the battle between health care reformers and hard-line conservatives has just begun, and Klein’s column must have left many conservatives scratching their heads.
But I’m concerned that Klein might also confuse some liberals. When Berwick talks about giving a patient the MRI he wants, he is not talking about simply casting evidence-based medicine aside in order to satisfy patient demands. In the essay published in Health Affairs, Berwick explains: “I contemplate . . . a mature dialogue, in which an informed professional engages in a full conversation about why he or she—the professional—disagrees with a patient’s choice.”
In Berwick’s view, a physician shouldn’t just say “No, you don’t need it. Trust me, I’m the doctor.” Patient-centeredness means talking to the patient about why he thinks he needs the test, giving him a chance to express his anxiety. Maybe the patient is scared; maybe his brother died of a brain tumor. At that point, a patient-centered doctor would engage in a dialogue with the patient, explaining why he doesn't think the MRI is indicated in this case. At that point, if the patient feels that the doctor has listened to him, most patients would accept the physician’s advice .
But if one patient persists, convinced he needs the MRI, ultimately Berwick would give it to him. A combination of compassion and respect for the fact that only the patient can know if this headache “feels different” from any headache he has ever had, drives the decision to say “Yes.” I would add that, at the very least, the test might well have a placebo effect—i.e. the headache the patient thought was a brain tumor will fade. That would be worth the price of the MRI.
But Berwick acknowledges: “If, over time, a pattern emerges of scientifically unwise or unsubstantiated choices—like lots and lots of patients’ choosing scientifically needless MRIs—then we should seek to improve our messages, instructions, educational processes, and dialogue
In other words, while it does little harm to give one patient an unnecessary MRI, doctors shouldn’t be giving MRIs to “lots and lots of patients” even if MRIs are all the rage. If many patients are insisting on the test, physicians should take this as a signal that they need to do a better job of educating patients, and explaining why over-testing can lead to over-diagnosis and overtreatment of what some physicians call “pseudo disease.” It’s not just that overtreatment is a waste of health care dollars; it puts patients at risk.
Moreover, Berwick admits that in some cases a physician must deny the patient’s request:
“I can imagine just as easily as my critics can a crazy patient request—one so clearly unreasonable that it is time to say, ‘No.’ A purely foolish, crazy, or venal patient’s wants should be declined. But my wife, a lawyer, told me long ago the aphorism in her field: ‘Hard cases make bad law.’ So it is in medicine: ‘Exceptional cases make bad rules.’ You do not successfully rebut my plea for extreme patient-centeredness by telling me that, on rare occasions, we ought to say, ‘No.’
“I say, ‘Your’ rare occasions’ make for very bad rules for the usual occasions.” In other words, a physician shouldn’t make “No” bhis knee-jerk response. Physicians shouldn’t let themselves become petty bureaucrats who automatically say “No” to every request. (Often, the bureaucrat takes pleasure in his power.) Medicine is a service profession, Berwick insists, and the question the physician should always be asking is “How can I help you?’ Helping,” he writes “not the enforcing of restrictions, is tonic for our souls.”
But what about a physician’s professional duty to serve as a steward of social resources—and scarce health care dollars? Here, Berwick points out that we have little evidence that patients’ demands drive overtreatment. Sure, there are patients who will ask for an MRI; others will want a drug that they saw on TV. But few patients demand that someone crack their chest open, or insist that they be hospitalized. Most would prefer to die at home, rather than in a hospital, undergoing yet another round of chemo. These are the big-ticket items. (Relatives may push for “more,” but the patient who is going to endure the pain and the side-effects is rarely a glutton for punishment, especially if a palliative care specialist has spelled the likely benefits and potential risks of further treatment.)
Berwick observes that patients are often more conservative than their doctors. Research done by Annette O’Connor and colleagues shows that when patients who have been told that they are candidates for elective surgery are given full information about the upside and downside of treatment —and an opportunity to share in the final decision—23 percent decide not to go under the knife. The Dartmouth research also suggests that “supply drives demand, not the other way around,” Berwick notes. Traditionally, doctors and hospitals tell patients what they need, and patients accede.
Fear that patient-centered medicine could lead to an epidemic of unnecessary, wasteful treatments is probably overblown. Or as Berwick puts it “Pandora’s box may be empty.”
Indeed, the patient-centered approach—giving patients what they want and need—means accepting the fact that patients may well say “no” to a physician’s recommendations. In such cases, they risk being labeled “noncompliant”—a word Berwick dislikes. “I wish we would abandon the word ‘noncompliance.’ he writes. “ In failing to abide by our advice or the technical evidence, the patient is telling us something that we need to hear and learn from. Honestly, how many of us have ever . . . skipped a statin dose? Are we fools who did that? Or did we choose that because of some sensible, local considerations of balance, convenience, or even symptom information that the doctor never had?”
In the case of statins, a great many patients are listening to what their own bodies are telling them: for some, deep muscle pain and other side effects just aren’t worth the possible benefits to staying on the drug.
Patient-Centered Medicine vs. Consumer-Driven Medicine
In order to make his argument, Klein winds up stretching a few points, and this is where he might confuse progressives..
For example, he suggests that “liberals tend to believe that the doctor is, and should be, the primary decision maker, and so the way to reduce costs across the health-care system is to change the doctor's incentives, give her more information about the efficacy of treatments, give her fewer financial incentives to err on the side of expensive interventions.”
In truth, liberals such as Berwick or the Dartmouth researchers believe in “shared decision-making,” (see the Foundation for Informed Medical Decision-Making website here ) which means giving the patient the same information that the physician has about the comparative effectiveness of various treatments. They do not believe that the physician should be the “primary decision-maker.” The doctor-patient relationship depends on mutual trust and respect; neither is “above” the other, though ultimately the physician will respect the patient’s choices.
As liberal healthcare economist Victor Fuchs explains: “The patient-physician relationship is very different from the one that we accept in commercial marketplaces because it requires patients and health professionals to work cooperatively” (rather than as adversarial buyers and sellers). Fuchs points out, patient and doctor must collaborate, with the doctor bringing his medical knowledge and experience to the table, while the patient contributes her knowledge of herself and her body as well as what she hopes, what she fears, what she is willing to wager, and what she is not willing to risk. .
Klein also argues that Berwick “wants patients elevated above either government or providers,” and that in this, he sides with conservatives. “In general, liberals have opposed consumer-driven medicine . . . “Berwick is attempting to rescue it, presenting it instead as a way to create a more humane health-care system.”
First, there is an enormous difference between “patient-centered medicine” and “consumer-driven medicine.” Klein is right that many free marketers are drawn to the idea of “consumer-driven medicine.” The notion that “the consumer” should be in the driver’s seat is grounded in an ideology that says free market competition should decide which treatments we receive. Sellers (i.e. health care providers) are expected to fashion their product to meet the desires of the buyer in a world where the customer is always right.
Consumer-driven Medicine is probably best defined by Harvard Business School professor Regina Herzlinger, who Money magazine has named the “godmother” of consumer-driven medicine.) In her book Market-Driven Medicine Herzlinger defines “smart consumers” as people who want “top quality, fast delivery, and excellent service—all of the time. They do not want to play games. A furniture retailer notes that American shoppers say, ‘I want it the way I want it and when I want it—and I want it instantly.’”
Above all, Herlzinger believes that health care consumers should demand “convenience, control and choice" Control or “mastery” places second on Herzlinger’s list of priorities. Here she praises “health care activists” such as Janine Jacinto Sharkey, who told Town and Country magazine how she custom-designed the types of incisions that her surgeon used to remove her breast cancer tumor, faxed questions that arose from her research about breast cancer to her surgeons, and even selected the classical music to be played in the operating room. Notes Sharkey: “I’m not the kind of person to sit there and allow someone else to dictate to me. I question. I’m involved.”
This is not what Berwick has in mind. For one, consumer-driven medicine leaves little room for evidence-based medicine. It ignores the need for dialogue, or the idea that the patient can learn from the physician, just as the physician learns from the patient. Secondly, Berwick doesn’t see the patient as a shopper, nor does he view the physician as a salesman, eager to beat the competition by delivering whatever the patient “wants”—regardless of his or her medical needs. Patient centered medicine aims to meet both the wants and the needs of someone Berwick views not as a “the buyer, ” but as a human being who needs help.
As for the government’s role, Berwick believes it is to make public policy using medical research. He writes: “Through modern clinical epidemiology, technology assessment, and clinical research, we have developed powerful new tools to assemble, digest, and judge the evidence-base for clinical practice. Rational care plans can emerge, based firmly in scientific evidence, and drawing on research published in hundreds of journals that serve as the basis for the expert opinions and guidance of professional medical societies."
At the same time, he would not impose comparative-effectiveness research (CER) on doctors and patients. Government should offer guidelines, not rules: “Mandatory compliance with CER directives could be dangerous, if you overdo the tightness of the connection between the knowledge of effectiveness and the rules of compliance. Then you get into the ‘proletarianization’ of medicine — physicians, payers, and patients being told what to do instead of being able to use their own judgment. There’s a balance here between advisory declarations with enough knowledge that they really have some force, and requirements.”
Conservatives, by contrast, don’t like the idea of “guidelines” and many tend to be wary of science. They prefer that medicine remain mired in custom, habit, doctors’ druthers, and patient demands –as long as the patient has the money to pay the tab.
As Berwick points out, that is how we ration care today—“blindly”, by ability to pay, without regard to patients’ medical needs. He would ration care “eyes wide open,” looking at the individual patient, the pro’s and con’s of the treatment. This is, I would submit, “patient-centered” rationing.
The Heart of Patient-Centered Practice
But in the end, for Berwick, patient-centered medicine has less to do with how much treatment the patient receives, and more to do with how he or she is treated. He begins “What Patient-Centered Should Mean: Confessions of An Extremist” with an anecdote that cuts to the heart of the phrase (*Bolding added by MM):
“Three years ago, a close friend began having chest pains. She headed for a cardiac catheterization, and, frightened, she asked me to go with her. As I stood next to her gurney in the pre-procedure room, she said, ‘I would feel so much better if you were with me in the cath lab.’ I agreed immediately to go with her.
“The nurse didn’t agree. ‘Do you want to be there as a friend or as a doctor?’ she asked.
“’I guess both, I replied. ‘I am both.’
"’It’s not possible. We have a policy against that,’ she said.
“The young procedural cardiologist appeared shortly afterward. ‘I understand you want to have your friend in the procedure room,’ she said. ‘Why?’
"’Because I’d feel so much more comfortable, and, later on, he can explain things to me if I have questions,’ said my friend.
"’I’m sorry,’ said the cardiologist, ‘I am just not comfortable with that. We don’t do that here. It doesn’t work.’
"’Have you ever tried it? I asked.
"’No,’ she said.
"’Then how do you know it doesn’t work?’ I asked.
"’It’s just not possible,’ she answered. ‘I am sorry if that upsets you.’
“Moments later, my friend was wheeled away, shaking in fear and sobbing.
“What’s wrong with that picture?”
“Most doctors and nurses, I fear, would answer that what is wrong with that picture is the unreasonableness of my friend’s demand and mine, our expecting special treatment, our failure to understand standard procedures and wise restrictions, and our unwillingness to defer to the judgment of skilled professionals.
“I disagree. I find a lot wrong with that picture, but none of it is related to unreasonable expectations, special pleading, or disrespect of professionals. What is wrong is that the system exerted its power over reason, respect, and even logic in order to serve its own needs, not the patient’s. What is wrong was the exercise of a form of violence and tolerance for untruth, and—worse for a profession dedicated to healing—needless harm.
“The violence lies in the forced separation of an adult from a loved companion. The untruth lies in the appeal to nonexistent rules, the statement of opinion as fact, and the false claim of professional helplessness: ‘impossibility.’ The harm lies in increasing fear when fear could have been assuaged with a single word: ‘Yes.’”
Inevitably, some doctors will protest “We can’t cater to each patient’s whims and desires. We’re already too busy; it would take too much time.” But Berwick argues that controlling the patient, directing the patient, chastising the non-compliant patient, treating the patient as a child, restricting the patient . . . . all of this also takes time, and enormous energy –most of it negative. It is exhausting.
Saying “yes” is “the best tonic,” Berwick argues, not only for the patient, but for the doctor. Saying “no” forces the doctor to distance himself from the patient, and what the patient is feeling, in an unnatural way: “threats to the health of the professions come far more from denying our basic instincts to help than from embracing them. What undergirds authentic patient-centeredness are the very same words we use when we first came to the patient’s side: ‘How can I help you?’ Helping, not the enforcing of restriction, is tonic for our souls.
Looking forward, Berweick envisions changing how physicians are trained: “The education of the new professional will reverse the academic notion that we must suppress our emotions in order to become technicians…. We will not teach future professionals emotional distancing as a strategy for personal survival. We will teach them instead how to stay close to emotions that can generate energy for institutional change, which might help everyone survive.
“Ask patients today what they dislike about health care, and they will mention distance, helplessness, discontinuity, a feeling of anonymity—too frequently properties of the fragmented institutions in which modern professionals work and train.”
Berwick’s Own Fears “What Chills Me to the Bone”
Berwick ends his essay by confessing that he dreads the day when, inevitably, he will become the patient.
“Partly, that fear comes from what I know about technical hazards and lack of reliability in care. But errors and unreliability are not the main reasons that I fear that inevitable day on which I will become a patient. For, in fighting them, I am aligned with the good hearts and fine skills of my technical caregivers, and I can use my own wit to stand guard against them.
“What chills my bones is indignity. It is the loss of influence on what happens to me. It is the image of myself in a hospital gown, homogenized, anonymous, powerless, no longer myself. It is the sound of a young nurse calling me, ‘Donald,’ which is a name I never use—it’s ‘Don,’ or, for him or her, ‘Dr. Berwick.’ It is the voice of the doctor saying, ‘We think…’ instead of, ‘I think…’ and thereby placing that small verbal wedge between himself as a person and myself as a person. It is the clerk who tells my wife to leave my room, or me to leave hers, without asking if we want to be apart. . .
“That’s what scares me: to be made helpless before my time, to be made ignorant when I want to know, to be made to sit when I wish to stand, to be alone when I need to hold my wife’s hand, to eat what I do not wish to eat, to be named what I do not wish to be named, to be told when I wish to be asked, to be awoken when I wish to sleep.”
In speech earlier this month, Berwick added: “Call it patient-centeredness if you will. . . It welcomes me to assert my humanity, my individuality, my uniqueness. And if we be healers, I suggest to you that this is not a route to the point. It is the point.
In the end, Klein is right in this: Berwick is not an ideologue. Nor is he a conservative. His idea of patient-centeredness isn’t driven by politics, it’s driven by empathy. His vision of best practice isn’t liberal or conservative; it’s merely human—and humane.