Archives for posts with tag: patients

When does patient-centered communication not lead to patient-centered care?

March 4, 13 //

How do we make patient centered care happen? One way is to ensure that both patient and doctor are using good communication practices on a foundation of a positive relationship – this is the subject of my book, Talking to Your Doctor.

But what if the doctor and the patient talk the right way, and get along, but somehow the plan of care does not end up focusing on what is really important to the patient, the subtle and overt ways in which her circumstances are different from the textbook or algorithm? Part of making the leap from checklist to patient is to maintain a resolute though polite and productive skepticism towards quality boosterism, another topic of my book.

We also need to ask a scientific, empirical question: does patient-centered communication always lead to patient-centered care? No, it doesn’t, says our anecdote and intuition, but for the first time recently I saw a scientific study which helps to show this. Published in the Journal of General Internal Medicine, it’s a study of physicians’ reactions to unannounced standardized patients and their ability to “depart from the script” of how diseases are usually treated on the basis of widely accepted algorithms.

The study has many moving parts and is worth reading in full. In brief, though, the researchers trained the standardized patients to portray cases which would differ in important but various ways from a baseline case presentation. (By and large, doctors cannot distinguish between well-trained simulated patients and real-life equivalents.) For example, a woman could come to see her doctor for an evaluation before a hip replacement. Rather than going through the motions, the astute physician should notice the red flags that some simulated patients were told to portray. For example, she might have symptoms of hypothyroidism. Or, in a separate alternative portrayed by some simulated patients, there might be a troubling context for the surgery (e.g., the woman’s desire is to have the surgery so that she can take sole care of her adult son with end-stage muscular dystrophy).

A widely used classification system was used to measure the patient-centeredness of the physicians’ communication, and independent raters – doctors themselves – then evaluated, blinded to the communication ratings, whether the doctors had met the challenge of the simulated patients, caught the red flags, and completed a plan of care which acknowledged the complexity of the individual before them.

You can guess the punch line: there’s no relationship between them, at least not found in this study. With the usual caveats – read the article to get the details – we come around to a basic question. If patient-centered communication does not inexorably lead to patient-centered care, should we be measuring something else? And does communication matter as much as we think it does?

No big surprise: I think it does matter, for ethical and psychological reasons as much as due to any possible impact (or lack thereof) on the plan of care. I’ll touch on those reasons in future posts.

TALKING TO YOUR DOCTOR: buy the book in July!

February 4, 13 //

My new book, Talking to Your Doctor: A Patient’s Guide to Communication in the Exam Room and Beyond, will be out in July. You can pre-order it now; see the publisher’s page for the table of contents. And if you know any bookstores with good taste in books about health, medicine, and communication, please let me know or send them my way.

TALKING TO YOUR DOCTOR presents the new science of communication to help improve not just your time in the doctor’s office and your own health, but promote the health of your community, guiding our entire health care system toward a humane medicine based on relationships.

The author, Zackary Berger, M.D., Ph.D., is a practicing primary care/internal medicine doctor and an Assistant Professor at the Johns Hopkins School of Medicine, where he teaches medical students and residents. He researches doctor-patient communication in the clinic and in the hospital to understand how our health care system can be made more responsive to ordinary people. This book is based on his expertise and the experience of his patients.

The last time you went to your doctor, you might have emerged feeling dissatisfied and disoriented. What did you talk about together, after all? You didn’t ask all the questions you wanted answers to, and you don’t remember everything the doctor told you. What is the plan? How do we get there? Nothing was clear after you left the office, and you don’t know whether it’s your fault or the doctor’s.

Maybe it’s your fault, or the doctor’s fault, or the blame can be laid at the feet of the entire health care system. But that’s beside the point: the important thing is to identify the problem at the root of this experience and take steps to change it. That’s what this book does.

In “Talking to your Doctor,” you’ll:

• Learn how to talk to your doctor – and get your doctor to talk to you
• Discover the science of doctor-patient communication to the lay public
• Remake the relationship with your doctor, and our health care system, on the basis of good communication
• Make sure your visit with the doctor is productive and meets your needs
• Help yourself and others avoid over-testing and over-treatment

Something about sports

February 4, 13 //

I used to roll my eyes at sports, thinking it was all a waste of time. Gradually, over the past three years, that has changed, culminating finally in a wholesale transformation of my opinions with the Ravens’ victory in the Super Bowl.

You can call me a fair-weather fan, but I am not a fan. I don’t know anything about football, I have not followed the regular season, and the two things that have interested me most in the past weeks about the sport have been the double murders that Ray Lewis did or did not commit in Atlanta in 2000 and the concussions that the NFL has been ignoring with the help of some dubious, and weirdly deceptive, league physicians.

What I like about the Ravens is that it makes our city feel good. Sure, there are plenty of important problems Baltimore should pay attention to. But no one fixes an unerrant gaze on life and death all the time. No one shutters the art museums in time of war.

I saw a patient last week with a terminal illness. I talked to him about what he liked to do when he was healthy. “All kinds of sports,” he said, and I could have sworn that out of the corner of my eye I saw Socrates murmur something about virtue.

Thanks to the Ravens I knew exactly what to say. I asked him if he was watching the game on Sunday. “You better believe it,” he said, and smiled.

I hope he’s happy today.

What it means to be healthy

January 28, 13 //

If health means avoiding disease, we need to find the best evidence on prevention: how to keep the sickness we dread from creeping up on us.

If health means a broader well-being, we need to find the best way to live. We can live poorly while being free of disease, but we can be fully realized human beings even while terminally ill.

As a doctor I am rarely asked how to achieve a state of broader well-being. This is probably as it should be. I have not been trained for such all-encompassing life counseling, nor am I comfortable in such a role.

But maybe tomorrow’s doctors should be expected to counsel in this way. There is so much we cannot control. We will all die; but we will not all die in the same way.

Unsigned notes

December 17, 12 //

We’re supposed to sign all our doctor’s notes in the old system so they can be carried over to the brave new one. But even when all our notes are squared away, and even when the new system fixes the flaws of the old (“and adds some extra, just for you”), there will be the same disconnect between chart and patient.

The chart, especially electronic, is a linear sequence of notes. But the patient lives continuously and her problems get worse or better even when we are not in the room with her.

The patient’s life is pockmarked with tragedies, illuminated with joy. But our chart entries are all moments pinned awkwardly to the screen with dissecting pins.

The patient is a person. We don’t take them for all in all, but split them up into medical components: and then we wonder, when we read our own charts, why it’s so hard to get a sense of the woman we have seen for years. And the patient wonders, when she sees those notes herself, why it doesn’t sound like her at all.

There are attempts, like narrative medicine, to record the manifold experiences and emotions of the person who sits in front of us. But they are not what happens in the vast majority of doctors’ offices, where we measure out someone’s life and health in fifteen-minute increments and electronic boxes checked off just so.

The end of the physical? It depends what we want to get out of it

October 22, 12 //

Here’s a great article about the physical exam, its historical roots, and why its benefits are not clear.

My reactions are manifold:

1. Not surprising. I’ve been telling people for years that there is no great evidence for *any* particular visit interval. My understanding: the “yearly visit” was invented by those great protectors of American health and welfare, the insurance companies.

2. The studies that show little effect of the annual physical, i.e. the ones which have gotten the most press recently, are measuring the wrong endpoint. Sometimes people like to see their doctor to maintain the relationship, so that the MD is there if they are needed.

3. Doctor-patient communication is not yet as good as it should be across the board. Nor is the visit optimized to get the most out of the relationship. When (if!) those improvements occur, we will move the needle on the next go-round of such systematic reviews.

Health care decision-making and emotion: beyond cognitive bias

September 24, 12 //

At Friday’s Medical Grand Rounds at Johns Hopkins, Jerome Groopman and Pamela Hartzband of Beth Israel Deaconess Medical Center and Harvard Medical School talked about what patients can do in their own interests when doctors disagree. Because doctors do disagree, they took pains to assure us, referring to the headlines of contemporary controversies: statins for primary prevention, to take one example; or prostate cancer screening – not to mention mammograms. Their talk was a short version of the argument in their book from last year.

Even if doctors do disagree, it wouldn’t be so complicated if we could just (just!) figure out what patients want. Once we had that settled, we could calculate the expected utility of each possible medical decision, maximize that utility, and go home satisfied.

Unfortunately, while health economists make much use of the quality-adjusted life year (QALY) as a way to incorporate supposed universal estimates of relative utility into medical decision-making, the assumptions that go with this are hard to swallow, as Groopman and Hartzband pointed out. First, our preferences are not static but dynamic. We might want one thing one day, and something completely different the next. That’s called “changing your mind.”

Second, people find it very hard to predict how they might react to situations in the future. You were in an awful accident and cannot use your legs. How many years of your current, completely healthy life would you trade off in order to avoid that existence? The very question assumes that the quality of a paraplegic’s life is substantially less. But people with chronic medical conditions realize that doctors, and healthy people, underestimate the quality of such a life (one example here).

Groopman and Hartzband’s talk, meant as an approach to such concerns, was well presented and thoughtful, but lacked a big piece of the puzzle. Their idea is this: every patient – actually, every human being, doctors included – operates in the framework of a limited number of “mindsets” when it comes to medical decision making: trusting medicine versus being doubtful of it; supporting technology versus preferring natural approaches; and wishing for maximalist versus minimalist interventions. These mindsets can help us figure out what patients really want, as opposed to the QALYs which some health economists find very useful and others (to quote Kahneman) compare to the ether beloved by physicisits in the 19th century: a poor approximation to the complicated facts of life, the variegated experiences of real patients.

The big piece I found missing goes under a name that is not beloved by today’s science and medicine writers: emotion. Where do these mindsets come from? Do they always apply? And – from a broader outlook – are we really able to lay every problem, disagreement, or complication in medical decision making at the feet of cognitive biases?

Biases explain quite a bit, but it seems intuitive – and accepted, even, by many scientists – that decision-making is bound up with emotion. It is popular to discuss medicine, and society in general, in cognitive terms. But not everything is cognitive or can be forced into the boxes of its science.

How do we understand our emotions – both those of physicians and patients – and how they affect medical decision making? Is it okay to rely on narrative, personal experience, fears, and suspicions when decisions have to be made? Are cognitive biases always bad, and is cognition the be-all and end-all of healtcare?

I am writing a book on this topic which will come out in 2013, but the short answer is No. Details forthcoming.

There was another missing piece in the Groopman and Hartzband lecture. They are right, of course, about doctors’ disagreements with regard to cancer screening – they are legion. At one point, however, they threw up their hands: every group of doctors has their own mindset. The USPSTF is minimalist, the urologists (say) maximalists about PSA testing. Everyone has their own cognitive bias and there’s no right answer.

This is true as far as it goes. Yes, there’s no universal answer to many deeply rooted medical controversies. But I firmly believe that there is a right answer for any given patient, according to her preferences, mindset, and – yes! – emotional needs in the context of the doctor-patient relationship.

Cognitive biases are not the answer; there is no one right answer, but emotion and communication can help us get closer to the variety of solutions necessary for the wide range of people and their medical problems.

Atul Gawande likes his cheescake: or, where metaphors fail patients

August 9, 12 //

Atul Gawande is a technophile and a believer in the checklist, and he yokes these ideologies to an attractive metaphor in his newest essay for the New Yorker. The article is worth reading in its entirety, but it can be easily paraphrased. The Cheescake Factory, like other successful restaurant chains, has “brought chain production to complicated sit-down meals.” They’ve done it by far-reaching standardization of the best possible processes – but not all the way down, since some freedom is left for the front-line practitioners, for example, the line cooks, to get the job done according to their personal practices. Flexibility is built into the restaurant’s practices, which change regularly according to new data. And customers are satisfied.

Health care in the United States, on the other hand, does none of this currently. Practices are incredibly diverse, often for no good reason. Particularly touching – as in so many of Gawande’s articles – was a story that he elicited from a Cheesecake Factory employee, Dave Luz, a Cheesecake Factory regional manager in the Boston area. Luz’s mother, aged 78, had a fall and was subjected to the depressingly normal dysfunctions, malfunctions, miscommunications, and screwups of an American hospital. And, when it was time for her to go home, no one coordinated anything. It was up to Luz to do everything, even get her dressed.

An aide was sent. She was short with him and rough in changing his mother’s clothes. “She was manhandling her,” Luz said. “I felt like, ‘Stop. I’m not one to complain. I respect what you do enormously. But if there were a video camera in here, you’d be on the evening news.’ I sent her out. I had to do everything myself. I’m stuffing my mom’s boob in her bra. It was unbelievable.”

A terrible story. Gawande concludes eventually with a not unexpected conclusion. Standardization should change American medicine. Best practices do not make it down to the medical equivalent of the line cook. Doctors bristle at being told to do things better. “Already, there have been startling changes,” Gawande reports with excitement. “Big Medicine is on the way.”

He tips his hat to the obvious objections. Are we ready to make medicine into Walmart? What about accountability and transparency? “Some will see danger in this. Many will see hope. And that’s probably the way it should be.”

But one problem doesn’t make its way into the article in more than dribs and drabs. Does it work? Does massive standardization do the trick? Of course, we know that checklists work wonders in the critical care setting (from which Gawande presents most of his anecdotal evidence).

But in nearly every other area of medicine, people are still hotly debating whether standardization, or as Gawande puts it, quality control, makes people less sick or helps them live longer. Does giving antibiotics within a specified timeframe actually keep people from dying from pneumonia, or increase the unneeded use of those medications? On a larger scale, do the incentives provided to accountable care organizations actually improve care?

There’s an even deeper problem. What do we do about the majority of medical concerns for which there is no standardization? What happens when clinical judgment, often based on little more than anecdote, meets patient preference? Perfecting the mashed potato tower and slicing the avocado to a quarter of an inch is perhaps quite like fine-tuning the ventilator settings or turning down the oxygen. Critical care involves many quantifiable judgments. But what about all the non-quantifiable judgments?

And what about all the parts of medicine which are not strictly quantifiable? That aide who manhandled Luz’s mother: what standardization would have kept that person from acting like a jerk? Employees are only as good as the organization hiring them, but human beings act only as humanely as their capacity for compassion allows. The technophile’s faith will always let him believe in the perfect cheesecake in the next concession over. But the astute skeptic, the careful consumer of metaphor will realize that sometimes a patient is a patient, not a dish off the menu.

Our definitions of quality

July 30, 12 //

What is your preferred quality domain, all things being equal?

Answer	Votes	Percent
Effectiveness	8	47%
Patient-centeredness	4	24%
Equity	2	12%
Safety	1	6%
Timeliness	1	6%
Efficiency	1	6%

It wasn’t a big poll, but I find the answers interesting. I asked you what the most important quality domain was. There’s nothing statistically significant here, because only 17 of you responded. (If this was just 1 person responding 17 times, let me warn you that the punishment for screwing around is severe and swift. This is a serious blog.)

What catches my eye are the several choices that lost out and ended up at the bottom: safety, timeliness, and efficiency. It could be that people didn’t really understand what these meant. (Timeliness – that medical care be delivered at the right time, i.e. neither too early nor too late; efficiency – that resources not be wasted, or underutilized, in delivering the care.)

Safety, though, is surely something that everyone understands. Why didn’t it get more votes? There’s no clear answer from this unscientific effort, but here are some speculative possibilities:

It’s something everyone assumes already exists, until they are themselves affected by subpar safety. Who judges an airline or a car by its safety record? Maybe we don’t talk about those things because we assumed that someone, somewhere, is ensuring the safety of our airline travel or automobile manufacture. Certain people, by pointing out governmental and private negligence, have forced us to pay attention to things we might not want to notice. The same is true of healthcare, but maybe that just hasn’t registered yet.

Or perhaps, subconsciously at least, the category “effectiveness” already folds in safety. If we are delivered quality care, we already assume that it will be done without errors – certainly without serious error. If our gall bladder were removed without a trace but then we got a blood clot in our leg, we might not consider that an effective cholecystectomy!

However, apart from our individual preferences, the real reason I put up this poll was to illuminate a larger problem. There is precious little research on what patients think is meant by high-quality healthcare. If we make use of new public reporting mechanisms (or reporting done by private concerns, like Consumer Reports) to tell us which doctors or hospitals are better, we should make sure that we understand and agree with the criteria.

Less is more in lower back pain…but what if the patient doesn’t agree?

June 11, 12 //

Often, doctors and patients request unneeded tests out of either ignorance, inertia, or fear. Recently, I was part of the Good Stewardship Working Group of the National Physicians Alliance, which convened focus groups of different medical specialties to agree on “Top 5″ lists of procedures or tests which are medically contraindicated and can cause harm. This work was published in the Archives of Internal Medicine.

As a continuation to that work, we recently published a review in the Archives summarizing the reasons why requesting imaging (i.e., X-rays, CT scans, or MRIs) in routine cases of lower back pain without red flags is not a good idea, and quantifying the harm to the patient. Read it here.

Of course, the question outside the scope of the immediate article is this: what happens when the patient, against all recommendation, wants one of these imaging modalities anyway? Should the doctor do it or not?

This question attracts me because it makes things complicated. The interest of the patient comes into conflict with our interest. Do we respect the patient’s statement as it stands, do we encourage the development of a more knowledgeable approach to medical testing, or do we avoid the conversation with some appeal to insurance companies’ coverage criteria?

In a useful review in JAMA, Brett et al. say: “Actively challenging patients’ requests for nonbeneficial interventions does not subvert properly understood respect for patient autonomy and is consistent with the professional obligation to practice high-quality, cost-effective medicine.” This is true enough. Challenging never subverts autonomy. But decision-making does. So what do we do when the rubber meets the road?

It’s not an easy question. What would you do in such a conflict, as doctor or patient?