Making Sense of Medicine: Bridging the Gap Between Doctor Guidelines and Patient Preferences
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Breaking out of the closed-ended history

8/18/2013

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Switching to a new electronic medical record provides the opportunity, or the burden, of re-entering all information concerning the family and medical histories -- and to think about what the use of these might be.

One reason, of course, is to ascertain what facts in the medical history might predict a greater risk of health problems later in life, or be useful to diagnose a current problem, or response to therapy. If our medical history is understood this way, then by extension, our family's medical history is just a way of getting more information about what might happen to us in the future.

But of course the medical history is more than just a series of checkboxes to figure out which conditions can be entered into a predictive risk calculator. It is another way of referring to the entire experience of illness from our (the patient's) perspective.

This goes back to a larger theme that I have discussed here (and in the book) time and time again, the difference between the open-ended and the closed conversation. The closed conversation is meant to collect information that the doctor (or whoever) is sure a priori should be elicited. The open-ended conversation, on the other hand, can turn into something that neither party expected. The doctor might found out that she has more in common with the patient than she thought. And vice versa.

A patient of mine with chronic pain, in her 70s, sees me every month, and to tell the truth I usually focus on the specific markers, both physical and pathological, or her multiple diseases. Until she was hospitalized recently, I never knew that she had served in the military a couple of decades ago, and in that capacity had traveled around the world. She has much to tell, and I never realized it.

Will this cure her pain? No. But I hope with this piece of information, and, ideally, both me and her attuned to the opportunities afforded by it, we will break out of the cycle of test-treat-test-treat frustration which so often hobbles us, especially for chronic conditions where fallacy of a single solution is misleading and often harmful.


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Consuming passions

8/15/2013

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I was invited by an organization to coordinate a Twitter chat about customer responsiveness. A lovely invite indeed, though I couldn't take advantage of it.

In thinking about the substance of the invitation, I returned to a theme which has been a much-discussed topic lately. Are patients consumers?

Some people try to say yes to that question out of a commendable instinct. If we sell cars, or even more if we make them, we want to make sure that the person who pays money for them gets the absolute best automobile possible. It's common sense, and ethical practice: producing well-made goods can help society and the individual. A consumer is worthy of respect for that reason, since she participates in an age-old relation.

But a patient is something different. Etymologically, a patient is a suffering person. Take away the suffering for a moment: a patient is a person, full stop Every person, no matter who they are, experiences suffering.

Pain involves the whole person; suffering threatens the very foundations of our selves. Being with the patient - the suffering person - at that moment is radical empathy, sacrificing some of the surety of our existence to make sure someone can live in wholeness.

In health care, in redressing health, we are trying to do the opposite of consume. We are attempting to achieve wholeness in the midst of suffering.

So, no. We don't want consumption. We want restoration. For lack of a better word: healing is what we seek.


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Two medicines

8/14/2013

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A friend wrote me after a reading:

"[W]hat I took from it is that there are indeed two MEDICINEs: the science one (read lab animals) and the humanistic one in the best tradition of Hipoocrates forward."

The reference to "two medicines" puts me in mind of the famous essay by C.P. Snow about two cultures: the sciences and the humanities. If you read far enough down in the Wikipedia article about the concept, you see - as with so many concepts - how it becomes complicated and quibbled with out of all recognition.

Sometimes, though, quibbling misses the main point. There are those who are blind to the sciences, and those who are exclusively centered on the virtues of the humanities. Not to say that there isn't overlap, but there should be more.

The same can be said of medicine. To be excellent professionals, doctors and nurses require both technical facility and appreciation of emotional complexity. And by "excellent" here I mean something like "virtuous," in the sense of striving towards perfection of the whole individual.

So, when we are talking about the two medicines, perhaps we should mean that the best of the scientific/biomedical view of the patient, and the humanitarian/narrative/irreducibly complex view should both be united in the provider. If that were the case, whatever action a provider took would be in a deep sense uncategorizable. 

Patient-centered care often brings the grandest flights of fancy rudely down to earth. Whether this applies to the idea of "two medicines in one provider" is difficult to say. I do think that most people are looking for a provider who combines multiple virtues: a full person, not a scientific machine nor a device to convert suffering into publishable narrative.

How to cultivate such inner diversity, true balance, without sacrificing depth and accomplishment...?


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"The doctors did this to me": but what if that's not helpful?

8/13/2013

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A friend suggested that I should share on this blog more actual conversations with patients, and observations about what I (or another doctor, or a patient) did well or poorly - and how to do better. I did some of that in my book, albeit it is hard to do much of this without modifying the identifying characteristics of the patient and the subject of the discussion. 

I will talk today about a fictionalized incident which has been repeated, in various forms, a number of times in my practice. Sarah, a 68 year old woman with chronic back pain, tells me about the terrible shooting pains she has down both legs, and the problems she has had walking over the past few months. We work up the possible causes, doing a number of blood and nerve tests, and come to the tentative conclusion that the nerve roots in her back are causing this nerve problem in her legs. 

However,  once we have this discussion, it rapidly becomes clear that this explanation is not uppermost in her mind, or not the most relevant. She reports that she had an operation to her lower back about five or seven years ago, and the doctor told her that there had been some error during the operation. It turns out that the error was not significant and not related to her current nerve or gait symptoms. However, at the point of these visits where we discuss the causes and potential therapies of her nerve problems, she can discuss nothing but that operation and the error.

This is of course to be expected, and I cannot ask her - nor should I - to leave this be. On the other hand, it keeps us from approaching the potential causes of her nerve pain. How do I get us past this conversation? I have done the commonsensical thing, and said, more or less, "I know this error was committed, and you have every right to feel taken advantage of, and yet...." but the message has not gotten through. I don't feel like being more confrontational would do the trick.

Before going more into (confidentiality-respecting) detail about our relationship, and the solution I eventually embarked upon, I would like to get your thoughts. How is this impasse to be breached?


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What not to call patients

8/12/2013

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There are many words that doctors have used for patients that we shouldn't use anymore. Realizing the inappropriateness of such terminology does not require much heavy lifting - and, yet, we are still using these epithets time and time again. I thought I'd give some examples, if only to get them off my chest. 

1. Non-compliant: As if the patient is supposed to be a good, obedient servant, following the doctor's orders, turning neither to the right nor the left.

2. Denying: ["The patient denies chest pain, shortness of breath..."]: As if these are accusations, and the patient is protesting their innocence.

3. Difficult: Like a problem or a disease, the difficult patient is meant to be solved, not helped.

4. Suffering from "pseudoseizures": If a patient has a non-epileptic, or psychogenic, seizure, there is little that's "pseudo" about it.

5. Uncontrolled diabetic: Again the one-dimensional assessment - there is diabetes, a disease, to be controlled, but then, by metonymy, the patient becomes their disease.

What words can't you stand when they are used to describe you, or your patients?


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Patient portal powers, activate! Form of ... befuddlement?

8/11/2013

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My institution recently switched from its home-grown electronic medical record to EPIC, an EMR for which many great things have been promised. Indeed, it is a considerable improvement over the past system. A number of hopes have been pinned on the latest-generation EMRs, not the least of which is the idea that finally, with this newest generation of tools, a nexus can be created and sustained among comparative effectiveness research (i.e., the branch of medical science that asks which treatment are better and why), clinical care, electronic records, and patient-reported outcomes. A very recent article by my senior colleague in the School of Public Health, Albert Wu, and colleagues, traces the genealogy and current outlines of this nexus - and advises what might be necessary to move this opportunity forward.

One point he doesn't raise in his article, however is which patients are actually using such EMRs. I was talking to a colleague the other day, and asked him idly what proportion of our patients had "activated" the code they were sent to access their patient portal into the EMR. "Twenty percent," he sang out, and then, perhaps noting my shocked expression, quickly added, "But that's good!"

I don't know how good that is, but - for whatever reason - I can't find much recent scientific literature on the prevalence of patient activation of such portals in recent years. However, a study conducted in New York City in the year 2010 published in the Journal of General Internal Medicine presents some interesting figures. Namely, that 16% of all patients in the study received an access code, and of these, 60% activated their code. Disparities were noted: those who activated their access tended to be whiter, English-speakers, and with private insurance.

Similar reports are available elsewhere, though not seemingly from much more recently [as always, I would love getting updates and will happily correct in this space]. The question remains: in any given practice, how do we make sure that the patients who are actually using the EMR faithfully reflect the composition of the entire population? If we do not somehow make these portals widely available, without disparities or inequities, we risk doing what doctors have always done: thrust health interventions at their patients without regard for accessibility or patient-centeredness, and then act cynical or walk away when patients do not snap it up with alacrity.


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Pain

8/8/2013

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I think everyone who sees patients, and treats a lot of them with a particular condition, comes to see that condition as a microcosm of all of medicine. And that's the way with me and pain. For some reason - perhaps it's because I tend to see these patients more frequently, i.e. more visits per year, than others - I think I have more of them.

Pain, and I mean here chronic pain, has certain characteristics which are shared with many other chronic diseases. Such elements of illness are often overlooked, and focusing on the forms they take in pain might be useful in conceptualizing them.

  • Often, medicines for chronic pain [as for other conditions] don't work that well.
  • For many people with chronic pain there is no one "medical" cause that explains their symptoms.
  • Other stressors - whether psychological, psychiatric, or social - play an important role in the severity and treatment of pain, and frequently these are un- or undertreated.
  • Pain is a symptom experienced by nearly everyone at some time or another. Thus many people think they know what chronic pain is like. But if I've heard one thing from every one of these patients, the occasional bout of acute pain does not reflect the experience of chronic pain.
Do you have - or have you had - chronic pain? Do you agree with these assessments? And what should we do to improve matters?


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You are there! Recording and photo from my reading on August 6th

8/8/2013

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I had a great time reading from Talking To Your Doctor at Bluestockings Bookstore and Cafe on August 6th in Manhattan. Here is a recording of the reading [warning: large file; recording thanks to Paul Glasser]. I'm introduced at around 1:00 and then I start reading at around 1:25. 

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Too much care for the president

8/7/2013

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George W. Bush got a stent recently. Unfortunately, it doesn't look like he needed it.

Let's backtrack. The former president, by all accounts, was in excellent health, without reported risk factors for heart disease, and recently ran in a competitive race for charity. On a recent physical exam, though he reported no symptoms, he underwent a CT scan which showed a blockage in an artery. At that point, Bush agreed to a stent - despite the reasonably clear evidence showing that stents in people without symptoms don't make them live longer, don't prevent heart attacks, and (since the person starts without symptoms in the first place), don't make anyone feel better. Except, perhaps, those who sell stents.

You can find opinions of those who are careful never to say that this might have been a mistake. Let's not mistake the horse for a zebra, though. It seems very unlikely that this procedure was indicated. But it happened anyway.

We know about the problem of overuse already. This particular instance, like any given instance, might not have taught us any unknown facts, but it does emphasize the same questions:

1. If a former president can accede to a stent he doesn't need, what chance do the rest of us have in avoiding overuse?

2. What were GWB's primary care doctor and cardiologists thinking?

3. Further to number 2. - if we assume that, in fact, there were no extenuating circumstances to this case, and Bush was "overused" just like many Americans are, what is the best way to respond to a given case? Call out the involved physicians?

There must be some way to turn a much-publicized instance of contraindicated care into a turning point in the campaign to reduce overuse.


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There are many book party stories in the naked city. This is one of them

8/7/2013

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Not naked, actually - that's a relief. 

There are plenty of sights and sounds that pleasurably impinged upon me during my trip to New York yesterday. I can't report all of them. There was the exchange I witnessed at Yona Schimmel's Knishery between a guy and a gal, a couple:

"These are kenishes," said the guy. "You get them with fillings. Apple, kasha..."

"Oh, look," she said. "They have egg roll filling, too." And then, as if with a sudden realization: "Oh, honey, I want to be a counselor." 

Finally, after a pause: "I think I'd like one with mushroom."

* * *

One of the most enlightening experiences of the day was meeting with two MPH students from CUNY, one of whom is by training a registered dietitian, the other a pediatric occupational therapist. They have had many research projects and interests among them. Enlightening, because they recognize the importance of primary care providers (really, the topic of my book - or the relationship and communication around the PCP-patient partnership), but at the same time point out how little recognition some health care workers give to others. To be frank: doctors often have no idea what therapists, nutritionists, and social workers do, much less mention them explicitly as part of the team. Later in the day, I had the privilege of being interviewed by Barbara Glickstein, public-health nurse, activist, and co-producer of the WBAI radio show Healthstyles. She is an experienced interprofessional health educator, and I meant to bring up with her - though I didn't - that we should expand the boundaries of such education. Students from every single health field should be able to work together in their development and simulate the complicated, sometimes trying process of working together as a team for the benefit of a single patient.

There is an axis to navigate here. On the one end is the long-term, hopefully stable relationship of primary provider and patient - and on the other, the fact that all health care workers must cooperate in such a way as to foster trust by the patient in their group effort.
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    The author of Talking To Your Doctor and Making Sense of Medicine blogs about the books, shared decision making, doctor-patient communication, and the redeemable imperfections of healthcare.

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