Patient empowerment: Who should call the shots?

“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, I’m a bit puzzled by exactly what that term means. After all, I’ve always thought I have been practicing patient-centered care, ever since my first days in medical school, but apparently these days it means something different, at least if this article from a few days 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 recently published an article in Health Affairs entitled What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist. It’s unclear to me whether he is being sarcastic with his characterization of himself as an “extremist.”

In his article, Dr. Berwick attacks some aspects of the health care system that deserve attacking, specifically the inflexibility of 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, although 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, 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 even referred to such policies as “patient-hostile.” Dr. Berwick is correct to castigate such policies. He even describes three maxims of patient-centered care that are indeed quite admirable:

  1. “The needs of the patient come first.”
  2. “Nothing about me without me.”
  3. “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, 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. 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 I just wasn’t that good at doing it yet, and I got better with time. 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 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. 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. But first let’s move on to his interview in the NYT:

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.

Basically, 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.

So easy, even kids get it? I wonder what Dr. Berwick would make of the case of Daniel Hauser. Perhaps I’m not Dr. Berwick’s intellectual equal (being 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, 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, 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. How far outside of evidence-based medicine does a patient desire have to be before a physician can properly refuse to acquiesce to it?

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.” 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? The problem 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?

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 refused to perform a bilateral mastectomy on a patient who had been diagnosed with a very small 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 single 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 simply is not supported by science and clinical trials in a patient like her. In the end, she seemed to understand, but she clearly did not accept. She never came back.

Of course, there are other surgeons in the area who are more than happy to do bilateral mastectomies on any woman with cancer or DCIS who wants the procedure, regardless of how tenuous or nonexistent the evidence supporting such an option is. My viewpoint after having delved into the scientific literature is that scientific evidence only supports doing bilateral mastectomies for a unilateral cancer in the cases of women with strong family histories and/or documented mutations in BRCA1, which hugely predispose to breast and ovarian cancer. However, it is easier just to say yes, as Dr. Berwick suggests. In fact, it’s more profitable, too. 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. Worse, it 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’s even more on the hook for malpractice because the 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? Who has the MD? You or my client? My client depended on you for your best evidence-based medical advice.”

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:

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.

Finally, unfortunately Dr. Berwick’s philosophy is custom-made to be an enabler of the very woo that I 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, all the time, so to speak. They 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.