Every Patient Tells a Story, Part 3

What, exactly, is a physician’s ethical obligation to a patient? Though not discussed in the book, Every Patient Tells a Story, the question lingers in my mind after a careful reading.

A man with chest pain is seen in the Emergency Room. They do all the appropriate tests to rule out a heart attack. They send him home. He told them about the tingling in his fingers, but they didn’t really consider it. Is the definition of the ER physician’s job to diagnose the patient? Or is it to rule out diagnoses? Many ER docs, I think, would like to diagnose a patient if possible. But if not, their basic responsibility is to rule out diagnoses that must be treated immediately or conditions for which the patient must be admitted. If you’re not acute, and don’t need to be admitted, you can go home. The ultimate decision node in the the ER decision tree is whether or not to send home. It’s not about what the patient has, it’s about what the patient doesn’t have.

Every Patient Tells a Story is the most important book I’ve read in years. Dr. Lisa Sanders discusses, through riveting case stories and her own accumulated insight, how diagnoses are made. Her own considerable experience in documenting case reports of unusual and difficult diagnoses, from years of writing the Diagnosis column in the New York Times Magazine, has left her in a unique position to see the diagnostic process in both minute detail and in overarching trends.

Again and again in the book, difficult and sometimes obscure diagnoses are presented as exciting detective stories. The stories wouldn’t have made it into the book, I suspect, if they were obvious or straightforward. Often, the right diagnosis is missed again and again, by generalists and by specialists. I’ll ask again, what is the obligation of the physician? Are there limits?

I like to think that I’m like the doctors described in some of these stories. When faced with a seriously ill patient without a working diagnosis, they are tenacious, nearly obsessed. They call their doctor friends, they contact experts they don’t know personally, and they go to the library.

A little girl I take care of was brought in by her mother. She had a fever for a couple of days, but wasn’t complaining of any pain or other symptoms. Her mother was particularly concerned about a tick she removed from the girl’s abdomen about a week before. They were at a lake house, and the 3-year-old was swimming naked. The tick was tiny, not engorged, and could not have been attached for more than a couple of hours. Mom removed the tiny thing with her fingernail. A day or two later, there was about 1 cm (less than 1/2 inch) of redness around a tiny black spot where the tick was. The redness went away in another couple of days, and until the fever, mother wasn’t concerned. Having gone to medical school in Connecticut, I feel pretty secure in my basic knowledge about Lyme disease (named for the town of Lyme, Connecticut).

Here’s why I reassured the mother that this was unlikely to be Lyme disease. Generally, transmission of the disease requires the tick to be attached for at least 24 hours. The classic rash of Lyme disease, erythema migrans, is one I’ve seen several times. It has the distinctive look of an archery target, and 70-80% of people who have Lyme get the rash. Here in California, the incidence of Lyme disease is about 2 cases per million people (some other examples: Wisconsin 324 per million, Connecticut 873 per million). So it’s also just pretty unlikely. So I reassured her that unless the child had other symptoms, I wouldn’t recommend that we take her to the lab for a test for Lyme disease. But I said I’d look up some of the other possibilities to see if she needs to be worried about other diseases. It wasn’t a lot of research, not nearly as much as I have had to do for some diagnoses, nor as much as was done by some of the doctors working on the mystery diagnoses in Every Patient Tells a Story.

But I know this much for sure: nobody pays me for that time. Nobody pays me to pay another professional I might call for advice, just as nobody pays me for the time I spend on the phone coaching other doctors who call me for advice about their own mystery cases. I was impressed with the tales of caring and motivated doctors who clearly spent time in medical libraries and online and on the phone in order to make the difficult diagnoses in this great book. I know that they weren’t paid for that time. Is it their ethical obligation to the patient to do this work? Is the obligation of the physician ‘best efforts’ or, as in most malpractice cases, ‘at the standard of care?’ Or is the obligation to ‘do what it takes to get it right?’

I often point out that the current model under which we provide medical care, in which doctors are paid per visit is not always compatible with optimal care. But now I have a new concern. If doctors are paid for a visit—and indeed, patient-related work that isn’t done face-to-face with the patient is usually not paid—and if working for free is not ethical, are doctors obligated to work for free, on their own time, until they get a diagnosis for the patient? Presumably, the patient benefits. But economically speaking, the physician is effectively donating her services not to the patient but to the payer, the insurance company. It’s the insurer which gets the economic benefit of hours of additional physician work with no incremental cost to them. It is the insurer who has the most incentive to keep paying the doctors the way they do, to keep them churning through patient visits as fast as possible.

What is the ‘standard of care’ in the stories that are described in this book? (Or in the case reports described in her fascinating column, Diagnosis? It’s not getting the diagnosis right. If it were, then there would be a long trail of physicians who didn’t meet the standard in these cases.

Does the doctor have an ethical imperative to listen to the patient? It’s certainly appropriate professional behavior to be polite, but to listen?

If you’re the patient with the mystery diagnosis, however, what do you do? Who do you see? Some primary care doctors shunt difficult diagnoses automatically to specialists, just to save time. Sometimes, they send these patients to me.

As a primary care physician, I see an additional problem. When I have a real mystery, I do sometimes send my patients to specialists with the assumption that their specialized training and experience will give them insight I don’t have. And it frustrates me and my patients when, as so often happens, I am told that while they don’t know what’s wrong with my patient, they are sure the problem isn’t in their department. [I guess that’s why they make so much more money than I do.] What is their ethical (not contractual) obligation?

Is the job of the specialist to rule things out? Who gets to rule things in? And let's be blunt about it--it's easier and quicker to cross things off a list of possible diagnoses than it is to think of new things to add to a list. Whose job is that?