Archives for posts with tag: Talking to your Doctor

A patient writes (and I share with her permission):

On the night of April 20 after dinner I felt a great pain in my left shoulder and up along my neck. Chills and the pain prevented my sleeping. This pattern continued, severely, along with utter exhaustion by 3-4 PM every day and no appetite, through the 28th, while the pain began to extend into my left rib area, under my left breast. The 3rd night I remembered I had the 800-mg ibuprofen pills that Dr. B had given me, which I began taking every night thereafter, and it helped me sleep somewhat better. While all these symptoms persisted, after 4-5 days the overall pain began to slowly decrease a bit. On April 25, with my brother’s insistence, I went to the doctor. I was assigned to a Dr. A, who is working under Dr. D. She was worried that I might have had a heart attack, though we have no heart problems in my family. The nurse administered an electrocardiogram test, which turned out normal. Dr. D (whom I haven’t seen in 15 years or so!) also examined me. They had me get a chest x-ray and a blood test (for kidneys?) Dr. A phoned me today saying that these uncovered no problems, though a couple of little irregularities which she said are too minor to bother about. It was these that prompted me to have her send you the results, and this note of mine will give you their context.

All that being fine, now I have to return, on my own, to my original theory of what caused all this pain, sleeplessness and weakness. From early on I suspected that in working assiduously on the computer all day of April 19 and 20, I was unconsciously leaning strongly on my lower left arm and elbow – not having the perfect ergonomic set up for working on the computer. Nothing like this has ever happened to me before, though periodically I have tried to deal with the seemingly incorrigible constraints limiting my desk and desk-chair arrangement for using the computer. Though when I saw the doctors on April 25 I told them this admittedly-lay diagnosis, it didn’t interest them in the least, but now I”m pretty sure it explains what I experienced – though still not the complexity and severity of it.

Since you’re interested in the patient-doctor relationship, I thought I’d share with you my reflections on this happy-ending experience. (Though your book does help us a lot to understand the physician’s point of view). What I observed is that these highly trained physicians – both in “general internal medicine” – either weren’t interested in the “muscles and nerves” dimensions I had first proposed as a diagnosis, or else they didn’t have the basic knowledge or expertise to deal with what I related. I realize that they went for the potentially-fatal possibilities like heart, lung, kidney. Good. That’s reassuring. But even when I asked, before they dismissed me, what they would suggest about the severe pain and other symptoms, in the event that the tests showed nothing serious — even when I wanted to bring them back to the original problem, which still persisted – they offered no ideas about what might have caused all that I was going through, much less offered any details about how it might have happened, or guidance about what to do. And today when Dr. A phoned with the results, if I had not asked her specifically, she would not have addressed the problem itself. (She was not aware the pain had declined) When I did ask, she advised me to talk to a physical therapist, which I will.

Despite your excellent clarifications in your book, and re-orienting the patient’s perspective, we laypeople aren’t as compartmentalized in trying to think through our medical problems as you doctors are, though of course most of us are aware that the medical profession has various specializations. In my little episode, I thought that in the end the doctors I consulted would remember that I had come to them with a severe pain, and that they would eventually come back to addressing that. They seem very relieved that the worst hadn’t happened; but… hello? what about “me”? okay, if my heart, lungs and kidneys are okay, but what do you have to say about my pain and what might have caused it? and what should I do about it? I guess my original expectations in going to them were unrealistic.

Today, really for the first time, I feel fine. No pains. I hope I haven’t wasted your time with this little narrative, which I have not written out of frustration, but as part of our common interest in the “patient-doctor” interface.

Without noticing it, I crossed a threshold. Or perhaps I walked right into a mirror without realizing it? Do I look different? Do I have bruises?

It’s been ten years since I started blogging, first here, then here. Now I’m blogging at the book site too, in parallel.12_Pictures-Generation_Kruger_Untitled-You-Are-Not-Yourself_1981

As the Hebrew poet Y.L. Gordon asked, “Le-mi ani ameil?” Who am I laboring for? As a doctor, the answer is clear: I have a patient I am trying to help. As a researcher, there is a community of peers I am trying to satisfy (and a hoped-for public that the research benefits).

For the writer, whether creative or expository, the answer is less clear. Sometimes there is no other reader, and that’s okay. Sometimes the blog is a diary. Thoughts sound different when let out in the open air than when kept inside the head. I can be a writer and reader at the same time. This might help me develop thoughts which are useful to others, or can be expressed in longer form with greater attention to satisfying a certain public.

Talking To Your Doctor has been out for six months, and there is still a steady trickle of purchases. I am grateful for that. But it’s time to move on to the next book. That means less frequent posts – perhaps a decrease here and there in the level of polish and rationality. Maybe some more experimentation as I try and flesh out some thoughts.

Happy New Year to all, and I look forward to providing more details about this coming project as it finds form.

I had a great interview with Gail Zahtz last week. She really gets it all: the importance of encouraging relationships between patients and their primary care providers; the inequality pervading our current system; and the tensions between academic and community medicine. The interview was two hours by the clock but it went very fast. Have a listen.

A recent research article in the Journal of General Internal Medicine, and the gap between its findings and the real world, helps point up the usefulness and limitations of research. The article, by Susan H. McDaniel, PhD, and coauthors, set out to determine how often doctors speak about their colleagues in supportive or critical ways.

Their method is one widely used in the field: simulated patients, actors, were prepared with lifelike stories about their feigned cases of advanced lung cancer complete with manufactured charts describing what previous doctors had done. The conversations they had with physicians (some oncologists, others family medicine practitioners) were recorded, transcribed, and analyzed; each statement by a physician about the care provided by other doctors was categorized as Supportive, Critical, or Neutral.

The results were not altogether surprising, but I’ll let their abstract’s summary speak for itself (I edited it slightly):

 Twelve of 42 comments (29 %) were Supportive, twenty-eight (67 %) as Critical, and two (4 %) as Neutral. Supportive comments attributed positive qualities to another physician or their care. Critical comments included one specialty criticizing another and general lack of trust in physicians.

As far as I can figure out, however, the article did not discuss what doctors should do in a very common circumstance: when their patients did receive treatment from another physician that they, the doctors, feel was incorrect. Last week, for example, I saw a patient who had been treated by some oncologists (they weren’t from Hopkins – which doesn’t mean this story couldn’t have applied to them). They had given her treatment without discussing with her the risks or benefits. She came to me bewildered and frustrated.

So what should I have done in that case? Made polite noises? Reflected the patient’s feelings? I did those as well. At some point, though, the patient’s intuitions should be verified and the truth called out: no, it is not okay to leave the patient’s wishes and preferences out of the equation, and all the more so when they are vulnerable, as cancer can make anyone.

Sure, tactfulness is key, and collegial relations with other providers can be maintained in such a circumstance, but identification of systematic missteps in care (such as leaving the patient out of a treatment discussion) is no vice. In fact, such honest talk is in the very service of professionalism.

How do you talk about your other doctors with your primary care provider?

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. 

Cross-posted – you know where. The Talking To Your Doctor blog!

Your book is called Talking to Your Doctor but really it’s doctors who need to learn how to talk to patients. Doesn’t this expect too much of us? After all, our doctors don’t have enough time to talk to us anyway.

Our intuition tells us that doctor-patient visits are subpar because there’s not enough time. However, research shows that patients and doctors can have satisfactory visits in countries where the general practitioner has even less time for the visit. In the book, I point out that it’s not so much the “clock time” devoted to the visit as it is the “visit time”: the attention, mindfulness, and concentration each party brings to the interaction.

 
Read more questions and answers at the National Physicians Alliance website.

Whether you believe in karma, metempsychoses, gilgulim, reincarnation, or merely the attainability of desirable forms:

Talking To Your Doctor is now available for the Kindle.

It is cheaper, and more Kindle-rific. More…Kindlovian. Kindle-style. L’estile – for want of a better word – Kindle.

Thanks for reading!

Cross-posted to the blog at Talking To Your Doctor.

Let’s share the glad tidings: Johns Hopkins is again ranked as the number-one hospital in all the land. I’ve written about this before, sharing my misgivings about ranking hospitals. What is the methodology? How sensitive is the ranking to random error, bias, and qualities of hospitals that have nothing whatsoever to do with their – quality, like reputation? What are we supposed to do with that information, who really uses it, and do they get better care as a result?

There are enough misgiving here to fill several chapters of a book, and in fact one chapter of mine is devoted to them. But the problem with measuring extends far past the ranking of hospitals. Doctors are being ranked this way, too, with the idea that public reporting of such information will help people make better choices about their health.

At the same time, many are trying to urge our health care system towards greater patient-centeredness. Various research teams are developing measures to quantify how well a given visit with a physician enables shared decision making on the part of the patient-doctor pair.

So, when presented with an array of various numbers – the rank of the hospital; the quality of the doctor; and the patient-centeredness of the practice – which one should the patient choose? Do we ask patients, as a whole, which ranking they find more important? Is each person to mix up a batch of numbers to find whatever aggregate satisfies their preference?

These are big questions. As I outline in my book, there is evidence that precious few patients or doctors actually use these rankings. Perhaps if we include patient-centeredness in the mix, and automatically generate a weighted average (or some other statistical combination of measures) that corresponds to patients’ preferences, people will feel like they are getting the best doctor they can find. That would be something to truly celebrate.

Cross-posted as usual to the blog at Talking To Your Doctor.

The last chapters of my book propose remaking our health care system on the basis of good communication and positive relationships with our doctors (and nurses, and physician assistants). How do we get to a changed system on the basis of individual behavior? Isn’t that unrealistic, even naive?

Remaking our system is a noble, grand struggle, one of the most important tasks for this century. Remaking is already going on in different ways. Obviously, there is health care reform, by which is meant legislation and executive action. This is, mostly, top down. I am not a libertarian: there is nothing I find philosophically inimical about top-down change. Health care is huge and someone has to flip the master switches.

At the same time, however, change has to come from the bottom. Patients are their own people with adequate decision-making capacity: can you believe that some doctors are only just coming around to this truth? But how do we get the system to embody this truth? We can not legislate shared decision making and patient-centeredness; nor can we merely, by fiat (as some e-patients are doing), say that patients are now the owners of the store.

Patients should be the owners of the store, together with their doctors, but just proclaiming that in a loud voice won’t get you anywhere. Some of us live out in the woods, where Internet calls-to-action don’t carry, and some others of us are too disempowered or intimidated to take charge in our doctors’ offices even if we are given permission to by those well-spoken advocates.

I like to make the comparison to the struggle for civil rights, which I am no historical expert in (so correct me if I am wrong). That struggle’s success was dependent on both legislative action and bottom-up activism, each of which informed the other. The exercise of the right to vote would not have been possible without the Voting Rights Act. The Voting Rights Act would not have worked without protests.

There is a place for health care reform to encourage primary care providers to establish a relationship with patients, and vice versa. But the importance of communication to such an endeavor, I can’t help but think, is not something that will come out from Washington. That will have to bubble up out of each exam room individually.

Tomorrow’s the big day! Please – if you have read the book already – review it on Amazon or Goodreads. If you haven’t read it, you are warmly invited to do so. Even more important than buying the book is letting me and others know what you think about it. 

Cross-posted to the blog at Talking To Your Doctor.

From engagingthepatient.com

Yesterday I spent the day at a panel sponsored by the Institute of Medicine meant to encourage the broad adoption of shared decision making: that is, a culture where doctors and patients help each other work towards a decision that’s right for the person seeking care.

Of course, my first question to myself (which I raise only occasionally to others) is this: what are the assumptions here, and how is this going to help people feel better and live longer?

The assumptions are that people – most people? the average person? the person living the most engaged and healthiest life? – want to be involved in making health care decisions. Advocates of shared decision making like to point out that this is self-evidently true.

But, as I point out in my book, it’s just not. Not because people are passive and would like doctors to walk all over them, but for any number of other reasons: they assume that doctors are in general skilled and have the patient’s best interests at heart (sometimes true, sometimes – unfortunately – not); they are intimidated and made uncomfortable by the determinedly alien nature of our healthcare system; they are too stressed, poor, uneducated, or sick to keep their mind on anything so complicated as a healthcare decision. One solution to this just-not-so (or the “yeah-but” of the real world that gets in the way of many ideologies) is to explicitly encourage patients to take that step in sharing decision-making with their doctors, to become the passionate self-advocates that many assume we all should be.

But when that doesn’t work, we should realize it’s not patients’ fault, or doctors: we need to remake our system. There are plenty of routes to do so. We can encourage doctors to involve patients in decisions by giving them money to do so; we can put more information in the hands of patients and explain it in a way they can understand; we can make it easier for poor patients, or those from disadvantaged groups, to access the care they need. Or – again, as I point out in my book – we can invest in the emotional foundation of care, a working patient-provider relationship that makes shared decision making more sustainable.

Does shared decision making lead to better health, less unequal care, and lower costs? It has that potential, at least for the first of those three. Whether shared decision making is the right star to chase, the direction to go in through the desert that will lead us to the triple aim of better care, lower costs, and greater satisfaction: that, I don’t know. My personal preference is for communication and relationships to be our north star. I can believe in SDM, though, too!