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.

Categories

More like this

I agree that paternalism is bad, but I also think you can take it way, way too far.

I'd like to be told what the options are, it's true. On the other hand, especially if it's a complicated decision, I do in fact want my doctor to recommend what s/he thinks is the best option. If I were a medical expert, I quite possibly wouldn't be *asking*. I'm not a medical expert. I want expert advice.

Granted, the cath lab team was rude in not explaining the rules but they were right in applying the rule. Back in my patient care days, I allowed a patient's family member to come in and hold the hand during a procedure. To provide a calming influence. The family member became hysterical and screamed. The patient tried to calm her down. The family member then fainted, fell and hit her head on the way down. If you want to provide safe patient care you have to control the high-risk variables. Period.

I was with you right up until close to the end. Some patient requests will seem unreasonable to someone. But it isn't as if there is a clear line dividing the unreasonable from the reasonable. With regard to your example of a request for bilateral mastectomies where the gold standard of care doesn't require them: you recount that you spent an hour telling the patient why her request was unreasonable. You don't mention if you asked her for her reasoning. For some of us, hacking off some useless flab is well worth even a tiny bit less worry about the future. Particularly if we've seen loved ones struggle with a lopsided chest and ill-fitting bras for the rest of their lives.

I was with you right up until close to the end. Some patient requests will seem unreasonable to someone. But it isn't as if there is a clear line dividing the unreasonable from the reasonable. With regard to your example of a request for bilateral mastectomies where the gold standard of care doesn't require them: you recount that you spent an hour telling the patient why her request was unreasonable. You don't mention if you asked her for her reasoning. For some of us, hacking off some useless flab is well worth even a tiny bit less worry about the future.

Oh, I don't know whether I'd say paternalism is bad. I like the idea of "soft", or libertarian paternalism. Let's be honest, in the realm of health care, the patient doesn't always know what's best. While it's not the role of a physician to make a decision for a patient, it makes sense that someone with a superior knowledge of a certain field would be in a position to present options and be a "choice architect" a la Thaler & Sunstein's Nudge.

The consumer model in education is killing colleges right now. Most students only want to learn based on what won't interfere with tmpm (text messages per minute).

As long as the reasononing is explained, i'm usually happy to defer judgement to yknow those people that have spent years studying and working in their expertise.

To be honest, too much choice is bad, in fact I remember reading an science article on people being unable to make a decision when given many arbitrary choices.

And what could be more arbitrary than 20 different alternative medicines.

By Ricahrd Eis (not verified) on 10 Jun 2009 #permalink

Orac,

certainly in the case above, this risk could have been explained to the patient? My husband has been sent out during a minor sampling procedure on me - the doctor explained that he did this since he was knocked out by a husband during such a procedure. That is totally understandable and more palpable to the patient than anonymous "hospital procedure".

Sorry for the dreaded inadvertent double post.

So, I can see that supportive family members passing out or hitting people is bad and to be avoided. But now that partners are routinely present for deliveries and c-sections haven't hospitals found a way to deal with those issues?

I couldn't help but smile when I read the argument about the patients who WON'T be moved. I am married to someone who is completely enamored with woo (has two of Hulda Clark's books, if that helps you understand his woo-siness).

If he were to get cancer, he would insist on woo treatment - ONLY. He is totally in love with conspiracy theory, etc. I do not know if there is ANYTHING I could do to convince him otherwise.

It made it easy for me to picture the patient preferring patient-centered choices and slowly damning themselves to suffering and death.

It is hard to be someone facing a possibly lethal or even chronic disease - there is so much desperation to be WELL. If you buy into the propaganda spread by some outlets, there is little to no trust of regular medical authority, and when you are told there is only treatment and no guaranteed cure it is easy to opt for any option that suggests otherwise (you do not want to know how many "cures" my husband has purchased to try for my own illness - I try to avoid as many as I can), and that is the biggest struggle evidence-based medicine has:

they aren't willing to LIE to make the sale.

Regarding c-sections, my husband was present for my second one, but not the first -- the first was an emergency, and although they had him scrub in, there just wasn't time to get him into the room. He stood waiting for them to call him in, and then suddenly a baby was being whisked out of the room and to the nursery, and he was wondering, "is that mine?"

He was a little disappointed, but the hospital had prepared us in advance that the father might not be able to be present for the c-section. This is because there simply isn't enough room at times. It depends on how many medical staff are needed and how fast things are moving (if it's an emergency, nobody's going to take the time to usher the father in; the first priority is getting that baby out safely). So father's aren't always allowed to be present even at c-sections nowdays; it all depends on the circumstances, and if things are dicey, you probably don't want some clueless noob getting in the way.

By Calli Arcale (not verified) on 10 Jun 2009 #permalink

Much ado about nothing. Why was this even published in the Times? If the man does not even see patients, why is he opining on the subject? I think he needs counseling and has way too much time on his hands. About fifty million people have no means to see any doctor at all, let alone fuss over the "centeredness" of their care! A woman with a breast tumor cannot be treated in the emergency room--what "choices" would Berwick (or Orac, for that matter) give her?

Funny, I was just thinking about this business of physicians urging certain behaviors/practices on their colleagues, when the doc doing the lobbying doesn't have to personally deal with the consequences.

As a hospital pathologist, I do a certain number of autopsies (a small fraction of my regular practice). The number of autopsies has been declining for years, and regularly some non-pathologist M.D. will be heard bemoaning this fact and vehemently urging that more autopsies be done. The latest example (in the current issue of the Journal of the American Medical Association) is in a review of a book on post-mortem procedures, where the reviewer (an academic pathologist) spends most of the "review" decrying the lack of autopsies. In most academic institutions with plenty of resident trainees, it's the residents and dieners (autopsy techs) who do the actual dissections, so I highly doubt that this guy performs the long, arduous, unpleasant and poorly remunerated grunt work of autopsies. And oddly enough, it is a rarity for any doc requesting an autopsy to want to be there to observe it for any length of time, much less the couple of hours it takes to complete the physical procedure.

As for "paternalism" in general, I do not think it is pateralistic and mean to gently refuse to enable quackery.

By Dangerous Bacon (not verified) on 10 Jun 2009 #permalink

There is also an ethical point about the medically unnescessary MRI. Chances are, that's being paid for (at least partially) through insurance. So he's basically advocating wasting everyone else's money to placate patient.

Oh, and there is a medically unnecessary treatment that is probably requested more than liver fluke zapping and vaccine refusal: antibiotics to treat a cold.

oh, and just to play Devil's advocate - I have "called the shots" for my children and me more than once, requiring the open ear and co-operation of our doctors.

I got my daughter the varicella vaccine before it was included on the official German schedule; without her ped's prescription, we would not have gotten it, so I had to convince him.

I got DH and me the dT plus pertussis booster and had to argue over that with our doctor because she thought I would be immune for life after my pertussis infection eons ago (she insisted on running a titer before she wrote the prescription).

We pay to get the annual influenza vaccination since our move to the UK, because the NHS only pays for sick and elderly patients (my hepA got paid by the NHS, my hepB I had to pay myself).

My son did not get the pre-school booster because that fell right on our move. Our GP then decided he would be fine with the 4 DTaPs he has had and his next booster would be the one in middle school (at age 13). However, I want him boosted before two "outdoor activity" school trips at ages 10 and 11, mainly for the tetanus protection. Either I'll be able to convince the GP, or I will have to go private yet again (at least there is always that).

It is somewhat of a weird feeling to be going to the very same private clinics that sell MMR monovalents to make sure that your child gets the reasonable protection (flu and tetanus). I have all the science behind me and the doctors have the official policies behind them (all the more frustrating when you have lived in 4 different countries with at least 4 different vaccination schedules).

As a paramedic, I have no objection to family presence during invasive procedures. Often the family are the ones performing CPR when we arrive. On the other hand, family presence requires that there be someone (social worker, nurse, . . . ) accompanying the family member for the entire time. I do not think that family should be limited by any legal definition, but only by the patient. Boyfriend/girlfriend/neighbor/clergy/favorite cashier at the supermarket, . . . . The patient should be the one to decide what family means to the patient - not some lawyer/legislator looking to impose their will on others.

When it comes to requesting unnecessary tests, there has been much discussion of this on the emergency physician blogs. A lack of agreement among physicians does not mean that whatever the patient decides is OK.

People go to alternative medicine practitioners because they want certainty. Medicine used to provide more certainty. The odd thing is that as more is learned, the amount of uncertainty increases. Many people are uncomfortable with that and want to be told what to do, what to think. Many people do not understand that science is not about certainty. Uncertainty scares them.

This does not mean that physicians should be forced to provide dangerous treatments, just to appease ignorant patients. Unnecessary or more invasive surgery, just to please the patient? No. Extra tests to satisfy the You can't be too safe idiots, who actually increase the risks.

In EMS we have some people insist that we fly patients to the hospital, because What if something goes wrong? Should patients make that decision? Absolutely not. We have a problem with too many patients being flown to the hospital. The most dangerous job in America is EMS helicopter flight crew, not Alaskan crab fisherman. The demands to fly everyone just in case leads to the deaths of some of these patients and deaths of the helicopter crews.

There are many things that we should allow patients to decide, but there need to be limits. With the current problem of physicians not being able to spend as much time with patients as they would like, this let the patient decide everything idea is not at all practical. Part of the problem with any treatment shortages is due to some know-it-all patients demanding that everything be done. CNN advertising brain-dead patients recovering, when the patient was never even close to being brain-dead, only encourage the belief that as long as drugs and machines can keep the monitors beeping, there is still a chance of the brain-dead family member getting up and going out to lunch with them. Medicine should not be catering to those, who are out to lunch.

A month ago I was in the ER on a Saturday night with severe abdominal pain. By 3am I was receiving an explanation from the surgeon on call that I needed surgery right away. She explained the best she could to the confused and terrified patient what was needed, what could happen, and what the uncertainties were.

In the ensuing month with its complications and setbacks, I've learned a LOT more about my condition, the risks, even about the nasty antibiotics I've been on. If she had attempted to give me that much information beside my gurney on that early Sunday morning, we'd still be there. And even with all that information in my possession, I'm still not qualified to evaluate it; I have little more than gut feelings (pun intended) to go on. I'm a pretty smart guy, but it's really a question for a specialist. Somebody who's really (another pun) dug deeply into the subject before I arrived in that condition.

Exhausted, I nodded assent and started signing papers. I'm still here, hoping to be back at work within two more weeks. That outcome was by no means guaranteed but it's safe to say if they hadn't operated, I wouldn't be.

I'm definitely sympathetic to the OR thing... maybe in that decision it was the right call, though the fact that the friend was also a doctor maybe suggests there could be some leeway... I dunno, but like I say, I am sympathetic because of this: When my wife have birth to our son, the doctors were pretty insistent that we do it in the OR "just in case" an emergency C-section became necessary. I disagree with they reasoning, but that's not really relevant to this post. We acquiesced, but we really wanted to let our midwife accompany us. They said no way, no how.

See, now that's kinda bullshit, because they weren't even planning on doing an operation (and like I said, their justification for the precaution was pretty flimsy to begin with). Here's someone who has seen C-sections before, so she is less likely to faint than I would be, and there's probably not even going to be a C-section, but because of these rigid policies they just said no way. And at that point, there wasn't much time to argue... they didn't spring this "we want to deliver in the OR" thing on us until she was already pushing, so WTF...

Anyway, I overall agree with Orac, though I'm sympathetic to a lot of things this doctor says. Patients feeling empowered is an admirable goal, as long as it doesn't come at the cost of their health...

By James Sweet (not verified) on 10 Jun 2009 #permalink

Having a chronic disease that requires a lot self-care (type 1 diabetes) and basic medical knowledge, I like it when my doctor explains things to me and gives me the "why" behind any new treatments/meds, etc. I'm reasonably smart and a compliant patient, so I hope this is why she respects me enough to do so. But though I may know my own diabetes better than anyone else, I don't know diabetes in general better than a doctor. I respect her knowledge and ability to do what's best for me--most of the time she's the one who wants the additional test or visit to the specialist. Sad to say I may be the rare one in the crowd, but this is what works best for me.

Heh, Kathy's story reminded me of the time I asked my doctor to increase the dosage of my medication, and it turned out I knew more about the risk profile of what I was asking for than he did (he just looked up the maximum allowable dose in his computer and gave the thumbs up... and I was like, "Well, it does increase your risk of seizures by about 4x over the standard dose.... but it's still a really small risk comparatively, so I'd like to go for it." He was like, "uh... wow, okay" heh...)

By James Sweet (not verified) on 10 Jun 2009 #permalink

"oh, and just to play Devil's advocate - I have "called the shots" for my children and me more than once, requiring the open ear and co-operation of our doctors."

I've had to do it too. I took my oldest son (he is 14) to the dermatologist a few months ago to have him look at a mole on his back that had been starting to enlarge. He took one brief look at it, and declared it to be "perfectly normal" and tried to shove us out the door.

I had to make it very clear to him that it was most definitely NOT "perfectly normal" and insisted that he remove it. He did so, but reluctantly.

About a week later, I got a call informing me that that "perfectly normal" mole was in fact moderately to severely dysplastic, and my son ended up having to return to have more of the surrounding tissue removed. Thankfully, all that remains there now is an ugly scar, instead of something much worse.

I shudder to think of what might have happened to him, had I not been so persistent; if I had just taken the doctor's word for it, because, well...he's the doctor!

That's certainly not the first time I've had to "call the shots" either, and I'm sure it won't be the last.

My mother is critically ill and hospitalized. Her sister and brother have flown in from Japan to be with her; it is that dire. They are extrememly upset that the doctors talk directly to the patients about what their problems are, and check in with options. In Japan, I guess, the doctors try to "put on a happy face" for the patients, and tell the real news and options to the family. Apparently my Japanese grandmother never knew that she had cancer.
I personally would like to have my options explained to me by my doctor, and then get a recommendation. I figure they've seen more than I have, and can be more objective.

How about the requests for antibiotics that aren't justified by the diagnosis?

Would he say no, or humor the patient and do his part to make yet another antibiotic useless?

By Tsu Dho Nimh (not verified) on 10 Jun 2009 #permalink

Options are good. I like it when doctors give me options. It's hard to speak generally, but perhaps your patients were upset because they didn't have a framework for deciding which option to choose. Ideally, I would get my options along with a recommendation about which one to choose.

My mother is a medical librarian at an academic medical center and sometimes she needs to remind her doctors that she is not their peer when she is being the patient. It's not that she wants paternalism. I think that would make her nuts, but she would like a recommendation based on clincial experience and skills. She can and sometimes does read the literature, but that's not a substitute for medical school.

Such a hard subject and it's all relative and individual. Having a 27 week preemie with IVH, ROP, PPHN, and a hundred other medical acronyms was a crash course as a parent for me. There is no way I could have made a decision for my child because of the sheer volume of information I was having to be educated on. When they called me for permission to place a PICC line I had no idea what one was. Quite frankly I agreed on the basis that they clearly felt my son needed one.

Fast forward to today though, and now at 2 year's old I know my son better then anyone. I know all his conditions, all the medical terminology. I appreciate when, at the Children's Hospital, the nurses stop and ask me questions knowing that I am more fully aware of my son's care then anyone. I know how fast he can tolerate his bolus feedings. I know what medications are best given to him by mouth or through his feeding tube. I know enough to question the order and the timing of his surgeries now.

It's purely individual though and it was a long wrong to get to that point.

Meant to say "It's purely individual though and it was a long ROAD to get to that point."

I am sympathetic because of this: When my wife have birth to our son, the doctors were pretty insistent that we do it in the OR "just in case" an emergency C-section became necessary. I disagree with they reasoning, but that's not really relevant to this post. We acquiesced, but we really wanted to let our midwife accompany us. They said no way, no how.

If you have the option of doing so (geography is often a limiter), it's often a good idea to visit various hospitals before the birth. The one I used had two ORs and maybe a dozen birthing rooms, dedicated for labor & delivery. You'd be put into a regular labor room until such time as a c-section became necessary. I labored in one of those rooms until things went bad and I had to be moved to the OR. In my original room, I was allowed to have lots of guests, and it was pretty much at my discretion who got to be there, as long as they didn't actually physically fill the entire room.

In the OR, it was different. I was allowed one guest, provided that the guest's presence would not interfere with the procedure. After moving to recovery, I was allowed to receive a few guests, and then when I was moved to the room where I'd spend my hospital stay, I could accept whatever guests I wanted. I think that was a good way to do it. If I'd had a doula, I could've had her alongside me right up until the c-section, at which point I'd've had to pick between her or my husband (and that's a no-brainer, frankly).

I don't think hospitals should require mothers to labor in an OR. In addition to making the procedure more uncomfortable, it can tie up an OR for many hours when the OR facilities are probably not even going to be needed.

By Calli Arcale (not verified) on 10 Jun 2009 #permalink

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."

Where have I heard that before? Indeed
http://www.washingtonmonthly.com/archives/individual/2009_06/018548.php
And the argument is nonsensical in this context as well.

I would add to anon's comment that I sometimes read abstracts out of the medical literature, or summaries of the literature in news reports (which I understand are sometimes unreliable) and take that as a basis from which to ask questions, and certainly not as a substitute for a doctor's training, in medical school and continuing in keeping up with the literature in a particular field and with experience - all are important, I know this very well from my own 'practice' as a scientist.

By Tlazolteotl (not verified) on 10 Jun 2009 #permalink

If I'd let the doctors call the shots in the ER, my husband would be dead. The were going to send him home with pain meds to deal with severe kidney pain and severe pain in his calf and said his persistent cough had nothing to do with whatever his problem was. They said it was kidney stones, though couldn't confirm the diagnosis. Turned out to be a renal infarction and a blood clot in his calf resulting from a growth on his transplanted aortic heart valve that caused endocarditis -- and hey, guess what, a persistent cough is a key symptom of endocarditis that even his hot shot cardiologist missed ... the ER docs were going to send him home with some pain meds -- took a lot of heated discussion and threats of legal action to get them to finally do their jobs. And then don't even get me started on physicians assistants ...

My sister, too, would be dead from Wegener's granulamatosis if she'd not insisted with threat of legal action that the doctors figure out what the hell was wrong with her instead of ruling her symptoms out as the ravings of a neurotic, middle-aged woman -- they figured out was was wrong, finally, but only after she was hospitalized with renal failure.

And then there was that doctor who decided it was necessary to operate on my mother for spinal stenosis, a woman diagnosed with frontotemporal dementia, until we fired him because he was both wrong and insisted on terrifying my mother.

Doctors are not gods, they don't always know what's best, they don't always know the answers, and they rarely remember that they are working for us, and they rarely utter the words "I don't know" -- we hire them to help us and we pay for their service and we are the ones who suffer the consequences of doctors failing to do their jobs. So if I want my husband to get that certain type of lab test (the one that, lo and behold, found the problem), give him the damned lab test. If you think I'm wrong about something, explain exactly why -- the key here is consultation, you know, that attempt at a problem-solving exchange of ideas between two or more people. If I want you, the doctor, to make all the decisions, I'll tell you -- other than that, assume I want to be involved in my own treatment.

@Calli Arcale:

This hospital had dedicated rooms for labor and delivery, and we were in one for, heh, well about 30 hours. But they insisted on doing the actual delivery in the OR, because they were concerned about shoulder dystocia. I did not, and still do not feel that the available information indicated a particularly high risk of dystocia -- but it was sort of hard to discuss it when my wife was pushing the baby out... ;D Heh, actually, we argued with them long enough, and the baby was coming out fast enough (dystocia my ass!) that he actually started crowning in the hallway on the way to the OR. Just like in a movie! heh...

Definitely agree about checking out the hospitals. We were going to do the birth at home, but ended up going to the hospital and getting induced because of a few things of concern that showed up on an ultrasound -- all of which turned out to be false positives. (In fact, in retrospect I think I might even know the cause of one of the false positives.. I think the technician may have taken an inaccurate head measurement -- but of course there's no way for me to be sure of that, and I'm just guessing based on something I saw her do) So anyway, that's why we didn't work it out with the hospital in advance. And actually, we found out later the hospital has two separate wings on that floor for delivery -- one for normal births, one for births where there is a concern. The former is much nicer than the one we were in :(

(shrug) It all actually went pretty well, considering that it was pretty much not at all the birth we had in mind. No *actual* complications. :) It's frustrating that we induced labor based on information that turned out to be incorrect, but oh well, hindsight being 20/20 and all...

By James Sweet (not verified) on 10 Jun 2009 #permalink

Just a comment on #2: One thing I've been the subject of twice is doctors or nurses having conversations about me within earshot but out of view. I'm sure this is not universal, but I would feel so much more comfortable with those discussions taking place at bedside. In one case it was the CNA getting a little guidance about the nerve block my surgeon ordered, and it caused me to question his preparedness when he returned to the bedside (fortunately he took that well and explained the situation). Another time it was ER staff discussing whether or not I would need surgery, which also would've been good to hear directly rather than indirectly.

In general I know I'm not a typical patient; I'm curious and I have a relevant background, and I have an interest in avoiding unnecessary interventions and tests. When I can, I choose practitioners who appreciate these qualities, but obviously you don't always get that opportunity.

They are extrememly upset that the doctors talk directly to the patients about what their problems are, and check in with options. In Japan, I guess, the doctors try to "put on a happy face" for the patients, and tell the real news and options to the family.

This was a common attitude in the Western world until a generation or so ago; I recall an account by a British doctor (Robert Buckman if memory serves) of being reprimanded by a patient's irate brother who felt that the doctor had "ruined" her by informing her that she had terminal cancer.

By Spaghettini (not verified) on 10 Jun 2009 #permalink

My GP is a bit too accommodating at times, I would say. My brother--who has a diagnosis of bipolar-1--asked this GP for meds to help stabilize the condition. Instead of a referral to a psychiatrist, the GP went ahead and handed out the prescription for the specific anti-depressant my brother asked for. I'm not a psychiatrist, but through a very moderate amount of research I had learned that it's a bit dodgy to give an anti-depressant to a bipolar 1 patient (it can increase the risk of a manic episode). My brother started exhibiting signs of hypomania, and the problem worsened almost daily. For anyone who's dealt directly with someone in that condition, rationality is not exactly a strong suit, so convincing him that something was wrong was almost impossible. He became fairly unstable, and even started exhibiting violent behavior. It took a rather dramatic event to get him (my bro) to consider changing meds. I think we were lucky that he didn't make a full break with reality. I love my doctor, and I still see him for general problems. He's kind, sympathetic, and funny. But he made a mistake in taking on a psychiatric patient when he was unqualified to do so. I believe that he assumed my brother was merely depressed, and when he made a request for a medication by name, the doctor went ahead and gave it to him. Being overly indulgent ended up making things much worse, and not just for my brother's mental health temporarily. It damaged his relationships, hurt his finances (ah, the joys of manic spending), and ended with an injury. That is what giving the patient whatever he wants can end in.

By BlueMonday (not verified) on 10 Jun 2009 #permalink

Not all doctors are as perfect as you Orac.

Doctors frequently don't practice evidence based medicine. Many like citing anecdotal evidence such as we see in the comments here for barring family from seeing any procedure. The one father that passed out in the delivery room anecdote was used for many years to keep fathers out.

I support scientific, evidence based medicine. I wish more doctors practiced it.

By FishOutofWater (not verified) on 10 Jun 2009 #permalink

Not all doctors are as perfect as you Orac.

Doctors frequently don't practice evidence based medicine. Many like citing anecdotal evidence such as we see in the comments here for barring family from seeing any procedure. The one father that passed out in the delivery room anecdote was used for many years to keep fathers out.

I support scientific, evidence based medicine. I wish more doctors practiced it.

By FishOutofWater (not verified) on 10 Jun 2009 #permalink

If I'd let the doctors call the shots in the ER, my husband would be dead. The were going to send him home with pain meds to deal with severe kidney pain and severe pain in his calf and said his persistent cough had nothing to do with whatever his problem was. They said it was kidney stones, though couldn't confirm the diagnosis. Turned out to be a renal infarction and a blood clot in his calf resulting from a growth on his transplanted aortic heart valve that caused endocarditis -- and hey, guess what, a persistent cough is a key symptom of endocarditis that even his hot shot cardiologist missed ... the ER docs were going to send him home with some pain meds -- took a lot of heated discussion and threats of legal action to get them to finally do their jobs. And then don't even get me started on physicians assistants ...

My sister, too, would be dead from Wegener's granulamatosis if she'd not insisted with threat of legal action that the doctors figure out what the hell was wrong with her instead of ruling her symptoms out as the ravings of a neurotic, middle-aged woman -- they figured out was was wrong, finally, but only after she was hospitalized with renal failure.

And then there was that doctor who decided it was necessary to operate on my mother for spinal stenosis, a woman diagnosed with frontotemporal dementia, until we fired him because he was both wrong and insisted on terrifying my mother.

Doctors are not gods, they don't always know what's best, they don't always know the answers, and they rarely remember that they are working for us, and they rarely utter the words "I don't know" -- we hire them to help us and we pay for their service and we are the ones who suffer the consequences of doctors failing to do their jobs. So if I want my husband to get that certain type of lab test (the one that, lo and behold, found the problem), give him the damned lab test. If you think I'm wrong about something, explain exactly why -- the key here is consultation, you know, that attempt at a problem-solving exchange of ideas between two or more people. If I want you, the doctor, to make all the decisions, I'll tell you -- other than that, assume I want to be involved in my own treatment.

Dr. Berwick dismisses exceedingly unreasonable requests are "rare."

They are not.

...most patients are not my "peers," at least not in the professional sense.

Even if they are your professional peers, they are not functionally your peer when they are wearing the gown instead of the white coat. The very humbling experience of being a physician-patient mitigates ones professional judgment considerably, and a doctor-patient would do well to try not to engage in too much "doctoring".

Good point. I've been fortunate enough not to have to be a patient very many times in my adult life. I've had some minor surgery, and, even though I'm a surgeon myself, it was outside my realm of expertise. Consequently, I did not presume to be my surgeon's peer.

I also remember your advice regarding medical treatment and advice for family members, and it's spot on. Objectivity goes out the window, and I become utterly indecisive and waffling, even when I know what should be done. I flake out.

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?

I don't understand, Orac. What would you do? Forcibly grab the child and vaccinate him or her? Report the parents to the child protective services? I assume not. So how does this illuminate the failure of Berwick's approach?

Dammit you beat me to it Tsu Dho Nimh!

I see that as a MUCH more frequent problem than vaccine refusal...But I suppose patients are more malleable as regards Abx than vaccines...

Doctors have a bully pulpit and sometimes must use it. While I certainly do not hold down patients and force treatment upon them, I do use very strong persuasion, which some people might even consider coercion (for example, "you must get treatment for illness x or you will likely die a horrible, lonely death chocking to death on your own blood"). It's the truth, it's "coercive" in a sense, and it's paternalistic. And yet, it's also probably ethical, if used judiciously.

Doctors have a bully pulpit and sometimes must use it.

I realize that your local selection of ski areas is a bit limited, but if you get the chance to drop by one on a holiday weekend you might stick your head into the Ski Patrol aid station. One of our biggest problems is convincing people that they really, really, really don't want to wait until Monday to have that silver-fork deformity seen and the cardboard splint is not going to make it all better.

By D. C. Sessions (not verified) on 10 Jun 2009 #permalink

To pay the bills while I study, I work in a call centre for an ISP. Whilst the effects of what customers agree to/can demand are not in the same realm as bad medical decisions, it amazes me how people forget and misinterpret what they are told.

Backround: We offer a service where your normal landline is not used, and you get a VoIP phone instead. This is not as reliable as a normal phone, and we need to stress that to new customers. (We use the example of having someone with a chronic illness that needs 24/7 contact with the outside world)

I couldn't believe the number of people that were aghast when they couldn't contact their elderly grandparents when they had connectivity issues etc etc. At first I thought that other call centre employees weren't properly educating people, but then I started getting customers that I'd educated myself denying that they had been informed that this was a possibility.

Orac has mentioned how patients misunderstand doctors. "90% of patients last 5 years" becomes "the doctor gave me 5 years to live." People are also more inclined to believe what they want to hear. "Of course you don't have to go through with nasty chemo, these herbs will take care of it" and to top it all off, people are bad at calculating risks that are foreign to them. They are hesitant of vaccination which has a tiny risk of complications, yet are perfectly happy to drive to and from the doctor's surgery. Cars are far more dangerous than vaccines.

Combining all this, if so called "patient centred" care became the norm, I can imagine situations like where the smoker making "informed consent" to take hormonal birth control, and suing when they get a blood clot.

By Tess TeelDeer (not verified) on 10 Jun 2009 #permalink

@Orac@40: I worry about flaking out where family are concerned, too. My parents are still relatively young and healthy, but they've had medical power of attorney papers made up and chose me because I'd "do the right thing". It's true that in the abstract I can articulate our shared values well and weigh whether different options meet them...(hopefully many) years down the line with a parent in crisis will I do as well?

What Orac? You didn't do the surgery on yourself? I presume only because (as you say) "it was outside my realm of expertise."

Of course it was outside his area of expertise - Orac may be a whiz with a scalpel, but he is a klutz with a soldering iron.

By Militant Agnostic (not verified) on 10 Jun 2009 #permalink

I am suddenly reminded of something that I saw said on several medical blogs including this one, not too terribly long ago. It was the observation that doctors need to be aware of what the patient wants -- as opposed to what the patient is asking for. The two are often different things. Folks like Dr Berwick overlook that.

By Calli Arcale (not verified) on 10 Jun 2009 #permalink

While we're on C-Sections, near the end of my wife's 56 hour labor (in a military hospital), she twice asked for a c-section, and was literally laughed off by the OB Chief, "Don't be silly." Delivery eventually was performed by forceps, with a large man from the NICU straddling my wife on the table, putting his fist on her stomache, and pushing my kid out from above. It took two hours to put my wife back together, and in the few years following, she's needed multiple reconstructive surgeries on various undercarriage parts just for functionality, and this has left her with some long-term health issues. (This story actually gets worse with added detail, but I'll stop here.)

While we're on autism (same kid obtw, coincidence? maybe), our pediatrician took 8 months of convincing that something was wrong. More than 1 month after my kid had regressed to completely nonverbal, it took an after-hours confrontation in an empty office for him to do more than brush us off or send my kid (twice) to have his hearing checked. And this is a very, very common story in the autism community. (And we wonder why the autism community leaves medicine for woo?)

Needless to say, if you are treating my family or me now, I'm not just taking you at your word.

By benandcoopersdad (not verified) on 10 Jun 2009 #permalink

I won't go into anecdote-land, but I will say that I think what kind of medical issue it is matters a lot as to how much input the patient should have. Some conditions are straightforward and there is really only one standard of care.
Others require considerable decision-making, and oftentimes the patient won't really have the information required to make the proper decisions. Shouldn't the doctors then take the time to explain the situation? But what if the patient either cannot or through willful ignorance will not understand the situation ? See, and someone said medicine was easy!

I believe there's a study by Ley or someone about the patient directed or doctor directed approach. It really has no say on acquiescing to use alternative medicine. If I recall correctly it is more to do with understanding their perspectives, providing them with evidence based options and making sure they're as informed as possible in the time available. So, I'd guess Berwick is making a bait and switch in promoting his method.

There are more dramatic possibilities than simply a patient wanting woo. There's a case in NZ at the moment where a number of people are being tried for killing a 22-year old relative by drowning during a curse lifting ceremony. The Crown argues that the victim did not freely consent and may have been suffering from the onset of a mental illness.
http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10577881.

What would Dr Benwick do if a patient wanted him to beat the demons out?

FishOutOfWater said: "Doctors frequently don't practice evidence based medicine."

Indeed. When I was expecting twins, the hospital tried very hard to talk me into getting a c-section. This despite the fact that I had had a completely normal pregnancy, was 37+ weeks, the twins were properly placed, and I had easily delivered a singleton a few years before. They insisted that "twins are risk pregnancies" and "risk implies c-section".

What, no anecdotes about patients requesting narcotics for their chronic non-malignant pain? Or chronic benzodiazepines for their insomnia and anxiety?

I generally avoided having family members present during procedures (as an internist I may not have wielded a scalpel often, but we can use some pretty long and wickedly-big needles). The one time I caved into the request of a significant other to be present, I was rewarded with a result that solidified my resolve to refuse such requests in the future. A huge man fainting at the site of his wife's bone marrow (a little Demerol and Versed had her quite comfortable and blithely oblivious to his injury as well as her procedure) cracked his skull and injured a nurse trying to catch him.

Regarding the 'neurotic middle-aged woman', I've already had several experiences along the lines of Oh, so you've been on antidepressants several times... well, then your stomach/knee/whatever pain is psychosomatic, go home, relax, sleep more etc. I trusted the docs only once and then I got antidepressants that did nothing with the stomach pains but caused me a false pregnancy and lots of fun when going from one doc to another to actually find out what's wrong.
Regarding the double mastectomy, if I was so unlucky as to get breast cancer, I would ask for breast reduction to AA size in one go.