Archives for posts with tag: doctors

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I saw a woman yesterday making a decision that might lead to her death, and I feel powerless to stop her. I cannot talk about her in detail. Her gastrointestinal tract is not working – it is putting out too much. Her body thus is deprived of functional fluid in the blood vessels, which makes it difficult to supply the kidneys, and their filtration is failing. She is wobbling, has fallen several times.

Medicines might decrease her output, or supplement her diet with the nutrients her body cannot retain. But she thinks they harm her.

Surgery might help repair her gastrointestinal tract to absorb the nutrients she is losing, which might help her kidney function. But she is afraid surgery will kill her.

Neither of these beliefs is completely out of the realm of normal. Medications are routinely prescribed for slim benefit and without due discussion of harms. Surgeons can underestimate risk, and surgery can lead to terrible consequences.

I think and write a fair bit about letting patients make decisions that are right for them, but every once in a while — and maybe more often than that — I face someone who is digging themselves a very deep hole. My nightmarish vision is that they are watching it fill with their own blood.

I laid out the options: she cTVA_Douglas_Dam_jack_hammerould take medications; seek the advice of the surgeon or other specialists. I urged her to keep the appointment with the kidney doctor. One option, I said, would be to admit her to the hospital to get her treatment with more dispatch; the other would be to find a facility where she could live more safely while still maintaining a modicum of independence.

None of their satisfied her. I imagined that she was encircled, entrapped by an impenetrable wall, and all the rhetoric, empathy, and understanding were thin reeds that broke into shards against the rough bricks. I felt like I was sitting and staring at her, willing her to change her mind, and I had no power. Rather, I do have power, and exercising it might be helpful, coercive, or both. Would that be the action of my best professional or humane self?

We parted with a handshake and a thank you for each other’s time.

She thanked me for giving her my expertise as a doctor, though it did not change her mind or course of action.

And I thank her for teaching me what I can be thanked for.

bioethicsinstitute.org/partnering

It’s time to register (free) for our Partnering with Patients conference, June 1, 2016, at Johns Hopkins. It’s open to all.

Please submit an abstract in any field related to shared decision making. Deadline May 1.

Questions? Seebioethicsinstitute.org/partnering.

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.

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 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.

 

On a weekend trip to Baltimore’s reductio ad freedonium of a used bookstore, a k a The Book Thing, a warehouse full of books that are yours for the taking, I finally got my hands on The Social Transformation of American Medicine. It’s a classic for its sociologic description of how American medicine got this way: physicians managing to hold onto their control by dint of social and economic power. The book is 30 years old but its conclusions are still spot on.

As with any great work of history, the reader wonders if the clock can be turned back without sacrficing what we have gained. It used to be, shows Starr, that sickness was treated at home; laypeople acted as their own practitioners; and physicians had difficulty maintaining the social prestige that enabled them to set their own fees and wall off outsiders from their guild.

Of course, we wouldn’t like to return to all of this. But we could imagine a health care system which involves a multiplicity of certified, qualified providers, and a greater inclusion of common sense which recognizes that for some common and nonserious conditions, a layperson can treat herself at home without any advanced imaging at all.

Can we get there from here?