There’s been a bit of buzz in the health blogs over President Obama’s decision last week to use the mechanism of a recess appointment to be the director of the Centers for Medicare and Medicaid Services (CMS). Recess appointments, for those who may not be aware, allow a President to put a nominee in place when Congress is in recess in order to have him in place without the messy process of having him approved by the Senate. True, the Senate still has to approve a recess appointment by the end of its term, or the seat goes vacant again, but it’s an excellent way to avoid having nasty confirmation fights during election years. Of course, both parties do it, and the reaction of pundits, bloggers, and politicians tend to fall strictly along partisan lines. If you support the President, then a recess appointment is a way to get around the obstructionism of the other party. If you don’t support the President, it’s a horrific abuse of Presidential power. And so it goes. Either way, I don’t really care much about the politics of how such officials are appointed so much as who is being appointed.
The man who was appointed last week to head CMS is Donald Berwick, M.D., CEO of the Institute for Healthcare Improvement. His being placed in charge of CMS will likely have profound consequences not just for how the recent health care/insurance reform law is implemented but for how the government applies science-based medicine to the administration of the this massive bill. Most of the criticism of his views that I’ve seen thus far comes from conservatives, who do not like Berwick’s apparent penchant for health care systems like the British NHS. Ironically, it’s views held by Berwick that will likely come into direct conflict with his mandate to hold down costs that are the problem with Dr. Berwick, at least to me. It is in these views where there is much that is admirable. Unfortunately, I also fear that there is much about Berwick’s views that are very friendly to the possibility of allowing the infiltration of woo into the U.S. health care system as well, and these fears begin with what Berwick is most known for, a term he calls “patient empowerment.”
What a grand word! After all, who doesn’t want to be “empowered”? Certainly not me. Perhaps that’s the reason why it’s become the new buzzword in a movement known as “patient-centered” care. Old fart that I am, when I first encountered the term I was a bit puzzled by exactly what “patient empowerment” means. After all, I’ve always thought I have been practicing patient-centered care, ever since my first days in medical school. Apparently these days it means something different, at least if this article from about a year ago in the New York Times is any indication. It’s an interview with Dr. Donald Berwick, who advocates what he himself calls a “radical” patient-centered care, having at the time recently published an article in Health Affairs entitled What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist. It was unclear to me then and it’s unclear to me now whether Berwick was being sarcastic or flippant in his characterization of himself as an “extremist.”
What is “patient-centered care”?
Patient-centered care seems, at least from the wording of the term, like an unequivocal good, like mom and apple pie, but is it? Let’s start with the good. In his Health Affairs article from a year ago, Dr. Berwick attacked some aspects of the health care system that richly deserve attacking, specifically the inflexibility of so much of it:
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.
To the extent that hospital policies are rigid, inflexible, and not necessarily in the patient’s best interest, Dr. Berwick remains on firm ground. In counterpoint, I will admit that I’ve had the occasional request by a family member to be in the operating room when I’m working and personally I don’t in general think it’s a good idea to allow friends and family in the operating room. I do, however, think it would be acceptable for everyone, as is done with pediatrics, to allow a family member or friend into the O.R. until the patient has gone to sleep. Be that as it may, I don’t disagree at all that many hospitals have policies and procedures that are not patient-friendly, much less patient-centered. Indeed, I’ve at times referred to such policies as “patient-hostile” and encountered them when visiting family members in the hospital. Coming from that perspective, I can say unequivocaly that Dr. Berwick was perfectly correct to castigate such policies. He even described three maxims of patient-centered care that are indeed quite admirable:
- “The needs of the patient come first.”
- “Nothing about me without me.”
- “Every patient is the only patient.”
The first maxim is self-explanatory. The second refers to the need to collaborate with the patient, not to make decisions without informing the patient and discussing them with him. The third is more or less a restatement of the first, at least in my book. Dr. Berwick, however, takes it farther:
The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.
While this sounds on the surface quite reasonable, as in many things the devil is in the details, more specifically in the interpretation of what these things mean. There is no doubt that the age of the paternalistic, “doctor knows best” model of health care is gone. For the most part, this is a good thing, although at times I’ve discovered that there are actually quite a few patients who actually want their doctors to tell them what to do. They become uncomfortable, sometimes even angry, when I present options to them, discuss the pros and cons of each option, and in essence leave the choice to them with my advice as to which option I consider the best. Indeed, early in my career, I actually got feedback from my division chief that I was perceived as being too wishy-washy and indecisive by some patients, as though presenting options suggested indecision. Maybe back then I just wasn’t that good at doing it yet, and I got better with time. At least, I hope so. In any case, it’s a fine balance, and, I suspect, patients expect more decisiveness from surgeons, who are going to cut into their bodies, than from internists, who are not. Be that as it may, I fully accept that every doctor-patient relationship should represent a collaborative effort in which patient needs and wants need to be taken into account and, wherever it doesn’t conflict with science- and evidence-based medicine, patients’s wishes should be paramount.
That’s where Dr. Berwick and I part company. He doesn’t think that clear science- and evidence-based guidelines should trump patient desires:
First, leaving choice ultimately up to the patient and family means that evidence-based medicine may sometimes take a back seat. [Emphasis mine.] One e-mail correspondent asked me, “Should patient ‘wants’ override professional judgment about whether an MRI is needed?” My answer is, basically, “Yes.” On the whole, I prefer that we take the risk of overuse along with the burden of giving real meaning to the phrase “a fully informed patient.” I contemplate in this 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. 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 to understand and seek to remedy the mismatch.
I’ll give Dr. Berwick credit. He’s an idealist. I’ll test his idealism in a minute.
What “patient-centered” medicine means: Patients as consumers
In order to find out more about what “patient-centered” care means, let’s move on to an interview in the NYT with Dr. Berwick from June 2009:
When you are in a position of having to deny and exclude patients, it is draining on the spirit. I actually think the mode I am counseling would be more satisfying or joyous for caregivers. Not all of the time or always, but it would be a better place to be. You would be putting yourself at more of a level with the patient, as more of a peer. And you wouldn’t have to carry on as if you were mythical. Medicine is imperfect and doctors know that.
I wasn’t sure I liked where Dr. Berwick’s train of thought was going then, and now, a year later, I’m sure I have some serious misgivings about it. First off, these days it’s a bit of a straw man. Physicians, by and large, have come down off their pedestals, at least in part. Even so, I would posit that professional expertise still matters. Dr. Berwick seems to think that it should take a back seat to patient wants, which is reasonable occasionally but most definitely not in many situations. In fact, Dr. Berwick seems to view patients as consumers more than anything else and physicians as service providers whose primary purpose is to satisfy these consumers, just like any other service provider or merchant. Worse, my impression at the time I read his interviews was that Dr. Berwick seems to think that medicine is easy:
Medicine is not nuclear physics. Most adults and kids can basically understand. There can be uncertainty in medicine, but if there’s mystery, something is wrong.
Medicine’s so easy, even kids get it? Is that like “So easy, even a caveman can do it?” I wonder what Dr. Berwick would make of the case of Daniel Hauser, the 13-year-old who, with the indulgence of his parents, refused life saving chemotherapy and radiation for his Hodgkin’s lymphoma. Perhaps I’m not Dr. Berwick’s intellectual equal (being nothing more than just a dumb surgeon and all), but personally I don’t find medicine that easy at all, at least not keeping up with the science and evidence and applying it to individual patients. Heck, and I’m a subspecialist. The breadth of knowledge that I have to keep up with isn’t nearly what it is for an internist like Dr. Lipson, although, granted, I’m supposed to substitute depth for breadth. Maybe my communication skills are simply inferior to those of Dr. Berwick, but I don’t think it’s easy (as Dr. Berwick seems to be implying that it is) to explain complex medical issues in language a patient with no background in medical science can grasp. Indeed, I always wonder if and how I can do better. In essence, Dr. Berwick is advocating that we move away from a professional model of medicine to a more consumerist model. In this view, he is the perfect enabler for pseudoscience in medicine. After all, if evidence-based medicine should “sometimes” take a back seat to patient desires, then there’s no reason to deny patients quackery if they request it, is there? Certainly Dr. Berwick doesn’t provide any guidance on this score that I’ve been able to find. How far outside of evidence-based medicine does a patient desire have to be before a physician can properly refuse to acquiesce to it? It would seem there are no limits.
Then there’s the word “sometimes.” I wonder what Dr. Berwick means by that word. He seems to argue that, if patients make choices that conflict with science-based medicine, then over time we physicians should be able to persuade them why such choices are not in their best interest. If not, he is saying, then it is our fault for not getting the message through well enough. While there’s some merit to the contention that it is our responsibility as physicians to present science-based medicine in a way that patients can understand and explain to them why certain choices are not justified by the evidence and that we all too often fail in that task, what should we do when patients have heard the message, tell us that they understand, but reject the message? For example, take the example of the patient asking for an MRI that isn’t indicated. What would Dr. Berwick do if he had explained to the patient that the MRI wasn’t indicated, laid out the evidence for that position, and the patient said he completely understood but wanted the MRI anyway? There’s nothing in Dr. Berwick’s writings or statements that indicate to me any guidelines whatsoever that allow a physician practicing his brand of “patient-centered” care to decide when it is acceptable to refuse a patient’s request for non-science-based medical interventions. The best he can come up with is this:
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 “want” 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.”
See what I mean? Dr. Berwick dismisses exceedingly unreasonable requests as “rare.” They’re not. I’ll give him an example of one such unreasonable, non-science-based request that is not at all rare and wonder how he would respond to it. Regular readers of this blog can probably guess where I’m going with this. Of course, before I get there, I could always ask what Dr. Berwick would do if a patient wanted him to zap his liver flukes “zapped” à la Hulda Clark to cure his cancer, but I hope that he would consider such a request to be a request “so clearly unreasonable that it is time to say, ‘No.’” One hopes that Dr. Berwick’s vision of patient empowerment would have at least that as a limit. I’m not so sure, though, because Dr. Berwick has given no examples for a patient-centered physician to use as guidance for when it would be acceptable to say “no,” presumably because he considers such examples to be so rare. Unfortunately, there is another request that thousands of pediatricians all over the nation face each and every day that is not evidence-based and, even worse, endangers public health.
That’s right. I’m talking about the antivaccine movement, which has placed so much misinformation in the public sphere that thousands upon thousands of parents have been sufficiently frightened that vaccines will make their children autistic, thanks to propaganda efforts by useful idiots like Jenny McCarthy, that they refuse vaccines for their children. Let’s say that a Berwick-like physician has used every tool in his patient-centered armamentarium of “education” and “information exchange” to try to persuade these parents that vaccination is safe and effective. Let’s say they still refuse. What would Dr. Berwick do then? He is, after all, a pediatrician, and this is a common problem that pediatricians face. Come to think of it, the fact that Berwick seems blissfully unaware of this particular threat to public health does not leave me with the impression that he’s actually hooked into what’s going on “in the trenches,” so to speak.
The problem to which Berwick seems oblivious is that this is an example of a non-science-based patient request that is not at all rare and that is incredibly resistant to the “information exchange” that he touts above all. It is also a request that doesn’t just affect that patient; it endangers public health. What would Dr. Berwick do about that? It doesn’t even have to be the anti-vaccine movement. Patients ask for or even demand non-science-based care all the time. Antibiotics for viral infections is an excellent example, and thanks to physicians’ overuse of antibiotics, among other factors, bacteria are becoming more and more resistant to once powerful antibiotics. These are issues that don’t just affect individual patients who demand care not based on science; declining vaccination rates and bacterial resistance to antibiotics potentially endanger everyone.
I believe in the collaboration between me and my patients in order to solve their problems if we can. However, contrary to Dr. Berwick’s belief, most patients are not my “peers,” at least not in the professional sense. They may be my peers in the human sense, but working together to try to treat their medical problem is not the same thing as their being my professional peers. I view the collaborative nature of the doctor-patient as a consultation. The patient is coming to me for my expert opinion, and I try to deliver, at the same time trying to educate the patient about her disease process and why science-based medicine recommends what it does. I try as much as possible to take into account what the patient wants and provide science-based options acceptable to the patient. For example, a while back I very strongly advised against a bilateral mastectomy on a patient who had been diagnosed with a very tiny pre-invasive breast cancer (ductal carcinoma in situ), had no family history of breast cancer, no risk factors, and a bilateral MRI that showed no suspicious lesions in the opposite breast. I spent an hour explaining my recommendation for a lumpectomy and radiation therapy and why bilateral mastectomies were not indicated. Even though I likened it to killing a mouse with a Howitzer, because it is within the range of evidence-based practice I expressed a willingness to do a simple mastectomy of the side with the DCIS with immediate reconstruction by a plastic surgeon if that was what the patient really wanted, while again explaining why removing the other breast without evidence that it has cancer would not prolong her life or even lessen her chance of dying of breast cancer. In the end, she seemed to understand, but she clearly did not accept. She never came back.
Of course, regardless of where I’ve practiced, there have always been other surgeons in the area who are more than happy to do bilateral mastectomies on almost woman with cancer or DCIS who wants the procedure, regardless of how tenuous or nonexistent the evidence supporting such an option is in a specific patient’s case. It is easier just to say yes, as Dr. Berwick suggests. In fact, it’s more profitable, too; a surgeon can bill a lot more for a bilateral mastectomy than for a lumpectomy. In academia, I’m fortunate in that my salary doesn’t depend on the number of operations I perform; the same is not true in private practice. Indeed, Dr. Berwick’s “patient is always right” sort of misreading of patient-centered medicine could easily lead to the vast overutilization of resources beyond what we see now. How Berwick will be able to implement such a view and at the same time keep costs down, as is a major stated purpose of the new health care reform law, I have no idea. Worse, patient=centered care, at least as I interpret it from Dr. Berwick, can cause a major conflict of interest in that physicians and hospitals often make more money by delivering more care. There’s already a huge incentive in the medical system to give the patient what he wants, if what he wants is more tests, more procedures, more medicine. Dr. Berwick’s vision, if realized as he envisions it, would vastly exacerbate that conflict of interest.
I also can’t help but wonder about liability concerns. If a doctor orders an unnecessary test or provides an unnecessary treatment that causes harm, he’s still on the hook for malpractice. Indeed, he should be even more on the hook for malpractice for the very reason that the test or medical intervention was not medically indicated and not evidence-based! Lawyers would have a field day: “Why did you order that test that caused my client harm? Because my client asked for it? Do you believe the test was indicated based on scientific evidence and the standard of care? No? Then why did you order it anyway? Who has the MD? You or my client? My client depended on you for your best evidence-based medical advice, and you failed him.”
And the lawyer starts counting his share of the judgment.
In the end, I cannot agree with Dr. Berwick that science-based medicine should “take a back seat” to patient “empowerment.” Indeed, upon reading Dr. Berwick’s ideas, I wondered if he actually practices medicine. It turns out that he has not, as Dr. Douglas Farrago found out at the time:
He ends his interview by stating that “we have to fix the health care system so that it gives doctors the time to do the job they want to do”. Funny, nothing he recommends saves time or saves money or makes the job any easier. This begs the question: does Dr. Berwick actually see patients anymore and how many? I called his office and it turns out that he does not. If fact, the person answering the phone states he hasn’t “in years”. Maybe it is time for him to get his hands dirty again?
Or not. Berwick strikes me as a very well-meaning person with some good ideas about how to make our health care system less rigid and more responsive to patients’ needs, both medical and nonmedical. Unfortunately, he also appears to be naive to the point of my wondering whether he has any clue what it’s like to practice medicine in the real world or even in the idealized world of academics.
Berwickian “patient-centered care”: An enabler of woo?
Berwick’s “patient-centered care,” as we have seen, is an idea that has the potential to improve our health care system if implemented properly. Unfortunately, Berwick’s vision of it would in essence give the patient what he or she wants all the time. Not only would it be very expensive, but it provides no rationale for leaving out woo. In fact, in February 2009, Dr. Berwick participated in the Institute of Medicine’s Summit on Integrative Medicine, where Dr. Berwick was featured with luminaries of the movement trying to infiltrate unscientific medicine into the then embryonic health reform bill such as Dr. Dean Ornish, Dr. David “a more fluid concept of evidence” Katz, Dr. Mehmet Oz, and Senator Tom Harkin, creator of NCCAM. All they lacked was Rustum Roy and Deepak Chopra. Some of the slides in Dr. Berwick’s presentation are not reassuring. For instance:
Integrative Medicine is health care that offers you the best shot at getting what you really, really want.
Dr. R.W., the physician who coined the term “quackademic medicine” described Berwick’s contribution to the conference thusly:
Even without regard to what he had to say it’s significant enough that Donald Berwick, M.D., CEO of the prestigious and (up to now!) very mainstream Institute for Healthcare Improvement, lent his good name to this woo fest. But what he had to say was rich. After introductory remarks about how happy and honored he was to be there he mentioned homeopathy and acupuncture, not to criticize them as health claims, but only to warn that they shouldn’t compete with each other, or with other modalities, for limited health care resources. In other words, let’s stop fighting and work together. (Groan). He praised the IOM for its contributions to the design of health care, starting (now get this) with “traditional, allopathic and curative care and now migrating into this distinguished and important new arena.”
But here’s the bomb. Berwick, who seems to believe that healthcare should be like any consumer industry, said that quality is defined by patients’ perceptions. This is his idea of patient centered care which he defines as the patient having all the control. The IHI’s metric for quality, he said, is (watch this, now, emphasis mine) “…give me exactly the help I need and want exactly when I need and want it.”
Think about that for a moment. The woosters and quackademicians of the world point to surveys like these which show that patients, in large numbers, really seem to want woo. They support their unscientific promotions by saying that because so many patients seek it out it must be valid. Adherents of science based medicine often point out the silliness of such thinking. Now, though, this argumentum ad populum is given new life and legitimacy because the Institute of Medicine and the Institute for Health Care Improvement endorse it!
Unfortunately Dr. Berwick’s philosophy is custom-made to be an enabler of the very woo that we so frequently rail against on this blog. After all, if patient empowerment and “patient-centeredness” trump science- and evidence-based medicine (except in “rare” circumstances that Dr. Berwick declines to define), then there really is no reason not to give the people what they want when they want it, how they want it, all the time, so to speak. In fact, Berwick even has a slide that says:
They give me exactly the help I need and want exactly when and how I need and want it.
Berwick’s philosophy could so easily be turned to say: Patients want woo? Give it to them! They don’t want to vaccinate? No problem. Just keep trying to “educate” them. And if you want to try to use education and “information exchange” to persuade a patient who is unpersuadable, good luck with that. Unfortunately (and I do mean that; it is truly unfortunate), insurance companies don’t exactly bend over backwards to pay for lots of time spent educating patients. I wish they did, but they don’t. Truly, Dr. Berwick is, as I said, an idealist, and it is true that the current medical system is, all too often, not patient centered in any meaningful sense of the term. Sadly, his idealism is not grounded in the real world and, worse, it does not place science- and evidence-based medicine on even close to the same level as it does to turning patients into “consumers” and physicians into people who cater to those consumers no matter what.
No matter John Weeks at The Integrator Blog is so happy.
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