Archives for posts with tag: patients

In recent months, two stories of mine, both having to do with medicine, healing, and Baltimore, have appeared in two literary journals.683788737

In “A Letter for You,” appearing in Gravel, a white doctor tries to orient himself with regard to his African-American patients.

In the first issue of Dryland, a new litmag from LA, you can read my story “Pain and the Machine,” in which a floor buffer chases a janitor down the hall.

I’d love to hear your reactions to these.

Scott is sitting in the corner of the kitchen, feeding baby Antonina freshly pumped breastmilk since I am busy cooking. His voice is a little raspy and his hands are clumsy because he is on day 2 of Folfox cycle #6.

More about an unexpected juxtaposition here.

My mother was a domestic worker. My father worked for Bethl’m Steel. Neither of them had any insurance. He died and they got insurance. Three thousand dollars. Eighty eight dollars a month for her and the kids. She didn’t get any Social Security because of who she worked for. Three kids! Imagine if they had gotten sick. They never got sick. We never got sick! I think everyone should get health insurance. Why don’t they want them to get health insurance?”Bethlehem Steel Mill

“They don’t like poor people.”

“It’s not their fault! I think everyone should have it.”

“I saw Selma. It was a great movie. I had four kids then. I couldn’t get up and go to protests. I saw Obama when he spoke to our church group. I didn’t think he was going to be president. I never thought a black man could be president.”

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.