Archives for posts with tag: patients

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.

I just got back from the annual meeting of the Society of General Internal Medicine. You should check out all the tweets.


Below is a poster that I presented there on how doctors and patients communicate in the hospital. Though the findings are limited and preliminary, I would welcome your comments!

How do patients and doctors communicate in the hospital? Assessing shared decision making and interpersonal…

I am looking forward to participating in a TEDMED Google+ Hangout, March 25th at noon, on the topic of Health Myths. You should come participate! To quote a blogpost from the TEDMED folks:

You can get the flu – or worse — from a vaccine. Only old folks get strokes and heart attacks. Calories in, calories out. X-rays cause cancer. Sleep eight hours a night and drink eight glasses of water a day. Skip the sunscreen on a cloudy day. Take a multivitamin every day, just to be on the safe side. An apple a day keeps the doctor away. Exercise more to lose weight.

What are the most popular health myths, and how do they spread?  Does social media spread scams faster that it helps dispel them?  How can doctors help patients practice proven steps for prevention – and still keep up on current research themselves?

Great questions all. Leaving aside a quibble about X-rays and cancer (about which the jury seems to be out still, or at least conflicted), the list above points to something important about so-called health myths: they come in many different flavors. Flu is not caused by a vaccine; that’s just wrong. But older people are generally speaking indeed at higher risk of strokes and heart attacks (though of course it’s not only them). “Exercise more to lose weight” isn’t exactly true, but exercising is one way to keep off weight lost through reduced caloric intake (and – can lead to weight loss by itself, actually).

All this is just to say that one myth may be quite unlike another. They are as diverse in their way as any kind of belief. Thinking more about it, I would like to jettison the whole term “myth” altogether. We all have beliefs. Some of them hew fairly closely to the science – others don’t.

What the summary above artfully avoids is potentially the most interesting question: who believes most in scientifically unfounded assertions? Is it patients, or doctors (and nurses) themselves? I would wager that we are all in the same boat. Much as doctors don’t know statistics, much of us don’t practice according to the medical evidence either.

If you push a little bit on many medical assertions once held to be widely agreed-upon truths, you will find yourself coming away with a handful of dust — and more, if you push harder. Does everyone need screening for prostate cancer? No. What about breast cancer? Unclear. Does vitamin D help much, say, for heart disease (except in older populations at risk of fracture)? Maybe, though the evidence is thin. If we treat mild hypertension, can we expect mortality benefits? Doesn’t seem that way. Yet practices based on these suppositions persist.

In other words, doctors are as much myth-makers, and myth-peddlers, as patients. Which means we all need to reevaluate our relationship to science. If doctors can be as uncertain as patients, shouldn’t we be skeptical of the hierarchy that still obtains in certain quarters? Shouldn’t we come together to discuss our fears, preconceptions, worries, and expectations?

I am coming at this question as a reader. There are a lot of health care practitioners and patients who write what can be loosely termed “creative writing on health-related [or medical] topics,” which for lack of a better definition (that’s near at hand) I will term anything that aims to get at the non-empirical truth of what it means to be sick, or take of those who are. I struggle with one fact: many of these pieces (short stories, articles, poems) are not interesting aesthetically. Let me put this bluntly: when I read them, I am bored.210269526

I am not jerky enough to name which writers or pieces I am talking about, but I do want to outline the conflict I feel when saying this.  On the one hand, the intention is good: the writer wants to illuminate an aspect of the life of a patient (or a provider) which has been overlooked in the empirical literature.

On the other hand, if such a piece is cliched, overwritten, or – most often – leads to a thuddingly obvious conclusion (suffering does not redeem; pain is bad; illness can be isolating; doctors can lack empathy), the intention can be undermined. But can we still take something away from the piece in that case to help inform our understanding of illness?

In other words: are we looking to be impressed as discerning readers, enriched as human beings, or both? Or should I leave my esthetic expectations aside if I want to enter into someone else’s world of illness?

Note: This piece has been edited based on comments below and on Facebook. Previously, I had directed this post to “medical humanities” writing, but I was using this term in a narrow and unhelpful way.

I haven’t written much about parenting, because most of it is hard and boring. Like maintaining health, either as a doctor or a patient, it’s usually a slog, requiring wellsprings of confidence to remain sure that what one is doing in the moment will have some measurable impact down the line. To that end, I have decided to found an organization to inspire such confidence, while establishing standards that can make most of us – the average parents, the pretty-good providers – feel supported in the slog. It is called the Adequacy League, and will have at least two arms, one for parents, one for physicians and patients.

The League of Adequate Parenting will emphasize that most of us who bellyache about child-rearing, and fear that we are not doing well enough, are actually doing just fine given our circumstances. This means, of course, that if we are parenting in resource-rich circumstances, we should appreciate that fact: our adequacy is not likely to be the same as that achievable under other circumstances.

Similarly, the Adequate Doctors-and-Patients’ Union recognizes – by charter! – that there is a tension to medicine. On the one hand, much of what ails us gets better with time, and we ought not to interfere with that. But, on the other hand, we want to actively interfere in a great many conditions for which there is no “natural” cure. Adequacy means neither interfering without exception on principle nor refusing to intervene on the basis of some misguided alliance with “nature.” Neither doing too much nor too little, and not looking over one’s shoulder continuously at the latest study. The adequate doctor or patient can be satisfied with her efforts toward health even as she knows she is not perfect.

Adequacy does not mean complacency, but the ability to take stock of our current limitations, appreciating all we are managing to do.

Excellence can be quantified, sure, and we should all aspire to it. Poor performance can be avoided as well with the help of keen analysis. But neither striving for excellence nor avoiding error and harm can get us through a weekday morning, a whiny toddler, a chronic illness, a day full of things-to-do and people with quite legitimate demands whom we need to serve. Sustaining a notion of adequacy is key. The Adequacy League recognizes this. Though it presents no awards, reimburses no one for travel expenses, and has no meetings, it will exist, quietly, wherever you are, as long as you need it.

It was my turn this weekend to cover for my colleagues in our internal medicine practice. It wasn’t all that strenuous. One of the hardest things to do, however, is justify to a patient a decision that another doctor has made that I might not agree with. It is hard to reconcile the many contradictions inherent in such a disagreement. On the one hand, the knowledge that medicine involves a spectrum of truths; on the other, the conviction that many courses of action taken for granted in today’s practice are mistaken – overuse of tests and procedures among the most common of them. There is the relationship between the patient and their primary care doctor which one is loath to interfere with, and then there is the need of the particular person at that time. Finally, there is the fact I referred to above: we are all in a practice, and so – to a greater or lesser extent – we share patients. Sometimes, it’s a good thing for our care to be viewed by a different pair of eyes and addressed by a new set of assumptions. Isn’t that what quality care is meant to be, if we agree with the assumption that it is quantifiable – an opportunity for someone to evaluate care at a clarifying distance?

Whenever a colleague of mine sees my patients, I hope they might see something I have not noticed before. Maybe every person who sees a doctor should be granted that opportunity with regularity: a built-in second opinion to make sure opportunities and dangers aren’t missed.

Posted to the blog at Talking To Your Doctor.

I saw a friend and colleague today, a physician, who is back from maternity leave, her child finally out of the NICU and mercifully healthy. She had the unwanted chance to see some of the health care system from the caregiver’s side, and the glimpse wasn’t all heartening. “It’s true what they say,” she remarked. “It’s different to see things as a patient.”

I haven’t seen the health system much from the other side. We have had our children, but my wife was the one who assessed the quality of the obstetricians and gynecologists first-hand. I have taken these children to the doctor, but not for anything serious, thank goodness. We are healthy and my parents are well.

But time will pass, and people will age and fall ill. That is nothing to look forward to. Each experience, however, will shed a different light on what it means to be a patient – and perhaps, in so doing, these experiences will make me a better physician, or at any rate a more sympathetic human being.

By the same token, as you – whoever you are, whatever situation you find yourself in – make your way through the many small fears, midsized setbacks, and destabilizing tragedies that make up much of life, you will become more experienced in knowing how you and your family react to them. You can help your doctor understand what sort of a person you are when such difficulties hit, and continue to invest in a relationship that might help in these circumstances.

 

Cross-posted from the LitMore blog. Thanks to Julie Fisher for the opportunity!

In the first months after I got here, I asked myself when I would be able to say “I come from Baltimore.” Then I realized that’s a stupid question. A city doesn’t require the participation of any given person. That is its promise of freedom and alienation: you can move to a city and be completely anonymous. Baltimore doesn’t care whether I’m from it or not.

The real question is: have I really gotten to know Baltimore yet? Do I feel a part? Living here means confronting huge daily diifferences. Black and white, rich and poor live starkly opposed lives in this city, and since I have always lived a life of comparative privilege it becomes a responsibility to place myself, somehow, within the entire city of Baltimore, not just the thin strip of rich white suburbs I live and commute in.

It’s hard to meet different kinds of people. You have to talk to strangers, which I’m not comfortable doing. But there are two things I love which have helped me overcome, if only in small measure, my city-dweller’s inertia which keeps me an individual in an atomized society. One is writing. The other is medicine. The two – especially in Baltimore – reinforce each other.

I work as a doctor in the gleaming city on a hill that is the Johns Hopkins medical campus. Hopkins has had its difficulties relating to the community, and only in past decades come to realize its responsibility and interrelatedness with it. I practice general internal medicine: in other words, I treat sick and healthy adults of all sorts: all colors, sizes, ages, shapes, and incomes.

As an ordinary person, I am impatient, preferring the constrained dimensions of poetry to the sprawling indulgence of a novel. “Yeah, get to the point,” I tend to mutter to myself when someone treats me to a tale. As a doctor, not through any alchemy but by dint of education, sustained practice, and proffesional aspirations, I listen more. I take down stories. I write down patients’ tales of suffering, anguish, success, heartbreak, and courage nearly every day – without any attention to literary artifice or style.

Unfortunately, I can’t tell these stories to anybody. This is a good thing, I think, this confidentiality. But it does compartmentalize. Over here is my comfortable, privileged rich-white existence, the one lived by 25% of Baltimoreans, more or less. And over there is the existence of many more Baltimoreans who are different from me in various ways. I can’t tell their stories in all their painful exactitude outside of work. Recently, many medical centers have started “allowing” patients to see their own medical notes, but none in Baltimore that I know of – and at Hopkins that is definitely not the case.

What I can do, though, is make up stories about people like them that I can share with the wider public, or at least with whoever wants to read them. Thus, without any concrete plan in this regard, I have been trying to write short stories ever since I came to Baltimore. I’m just starting out so I’m not very good at it. Learning how to put characters through their paces feels a lot like learning the lessons I have perhaps more completely internalized, in the past decade or so, as a parent of young kids: you can try to bodily move them from place to place, strenuously indicating that they should PUT ON THEIR SHOES and GET INTO THE CAR, but sometimes characters – like kids – have to be let alone to do what they want.

These stories that I’m trying to write and the narratives I record in the medical chart have a lot in common. They are meant to be read. They have a point: In the medical record, Chekhov’s adage about the gun hanging on the wall is all the more fitting. If someone comes to the doctor with chest pain, the doctor better proffer an explanation, by the end of the note, why she thinks the pain is there. Medical notes, like stories, can’t be loose, baggy, or meandering. They must hold the reader.

And both the medical note and the created story must understand the other human being, through acknowledging their concrete yet unknowable specificity. As a doctor I might not know what it is like to have many relatives in jail, others with mental illness, and still others with substance use problems. But I know what pain is like. When a patient comes to me with pain, I can try and heal it despite my ignorance of their inner life.

As a writer, I can no more divine someone’s psychic struggles than I can as a doctor. But I can try and externalize those struggles in a plausible way through showing what they do, what happens to them, what they say and how they react. I don’t aspire to any measure of healing through my still-inexpert prose stylings. But I do hope to inhabit this city of inequities more fully, and become another in the long line of Baltimore writers: if not through my stories, then at least through my medical notes in the privacy of the exam room.

Cross-posted to the blog.

I’m going on some smaller and longer trips over the next weeks, which put the topic of health disparities in comparative contexts. Disparities is the scientific term for health inequities. In short: everyone should get the same healthcare, but not everyone does. You get worse care if you’re black, or poor (unfortunately, those are obvious). What about if you are older, or LGBT, or speak a language other than English, or live in a rural area, or have a chronic illness, a disability, or a mental health issue? Probably. But the question is not just yes or no, obviously, but how, why, and what the solutions are.

Next Friday, October 24th, is the most local of the events. I’ll be giving a 400-second talk, that’s 20 slides in 20 seconds each, at PechaKucha Baltimore, the first local rendering of the speedy-talk format that has already been done in a number of other cities. My topic will be Talking Heals. And, while I won’t be mentioning specific health statistics about Baltimore inequalities (400 seconds isn’t enough for statistics!) I will certainly have in mind the great, abiding fact of Baltimore life. “The rich are different from you and me,” as F. Scott Fitzgerald said in another context: yes, they have more money (as Hemingway is supposed to have responded), and thus more health. How can we bridge the gap? Part is access (the poor in Baltimore can’t get in to see doctors, there’s a shortage of internists), part is cost (for obvious reasons) – but part is also quality. And part of that quality piece is to make sure that doctors and patients can communicate across lines of race, class, and origin.

On the preceding Sunday (I’m discussing these events out of their chronological order), October 20th, I’m giving a talk at the National Physicians Alliance: how do we make our doctor-centered system into patient-centered care? You might not be surprised to hear that the solution I proffer is neither all one thing (patient centrism, the advice of the doctor be damned!) nor all the other (status quo and to heck with EMRs!) but something in between: investing in and maintaining relationships.

Finally, in December, I am heading to Peking Union Medical College Hospital in Beijing, at their kind invitation. I hope to acquaint myself with their system and China’s system at large, which I am sure demonstrates some inequities unique to the Middle Kingdom and some shared with the US as well. From what little I know about the current Chinese socioeconomic climate, there is rapid and thoroughgoing social change – which I hope has not swallowed up previous governmental plans to provide better primary care access to millions of Chinese.

Through these multiple dimensions of care, quality, and access, applied across various regions, we can aspire to great change. Lots to do!

Last week I had an absorbing conversation with Natasha Gajewski, someone who, besides being the daughter of a former patient, is also the CEO of Symple Health, a company that has produced a new app helping patients to keep track of their symptoms. That patient of mine was by training a statistician, and to each visit with me he would bring piles and piles of printouts, records of lab results, readings from dialysis. I felt it less than relevant to his care – at least most of the information was just superfluous. But, on the other hand, I didn’t want to talk him out of something that was obviously important to him.

To hear now her daughter tell it, though, his data collecting was an obsessive thing, keeping his grandchildren away from him because  - by his own personal calculations – a visit from them might disturb his homeostasis.

Obviously, his daughter knew him much better than I did (he passed away a few years ago). But I can’t help think that here we have several sides of an important phenomenon: that of the engaged patient who records their own data for the sake of their health. This medical version of the “quantified self” can lead – as this story hints – to reassurance and obsession both.

The quantified self, for those who don’t know, refers to the practice of recording – through means both more and less technologically advanced – “readings” from daily life, and using that information for the benefit of health. Such an initiative has something in common with “big data”: the effort to amass large-scale collections of data on a population level.

From a medical perspective, I don’t know what we can expect from big data. Certainly many claims have been made for population-level data and its potential to improve health on a global scale. Who knows if that will pan out? But what about big data on an individual scale?

Data collection works if there is a question waiting for an answer. Otherwise it’s like playing the stock market without any real investment, watching random numbers jump up and down. If you have high blood pressure, checking your blood pressure at home might help to control it. If you have diabetes and check your blood sugar, ditto. But to monitor yourself with thousands of data points, most of which will not answer any askable question, verges on what Abraham Verghese has termed the iPatient – the electronic version of the patient, the tests and results visible on the screen that doctors view to the exclusion of contact with the actual human being. Only, in the case of this hyper-self-analysis, the iPatient is analyzing themselves in a data-centric way to the exclusion of the bigger picture.

What we need is at least two things:

1. A sense of what data will actually be helpful for a given patient, and what “help” (i.e. clinical improvements, patient-relevant outcomes) can be expected

2. A realization that any new source of data will, in general, not be the game-breaking change that people are looking for. Health care problems, in general, are just hard, and data are only part of the solution, which involves patient preferences, the multitiude of possible ways to identify the problem (differential diagnosis), and the goal of patient and physician.

3. An appreciation that data collection can provide, to the individual, both very real reassurance and self-empowerment, as well as a source of obsession and paradoxical lack of control

As Natasha said about our conversation, there are no easy answers, neither unlimited data nor its lack.