A rose by any other name... would be something else?

The New York Times had a fascinating article in their magazine this weekend about the Undiagnosed Diseases Program sponsored by the N.I.H. The article focused on a 31 year old woman named Summer Stiers in declining health, who has spent the last 20 being undiagnosed or misdiagnosed by well-intentioned physicians. She was frequently misdiagnosed with autoimmune conditions, because her symptoms just scream "autoimmune".

The article followed her disease progression, and her experiences in Bethesda, MD being examined by a constellation of specialists from the N.I.H.

There were countless fascinating aspects of this article - I recommend you take the time to read through it. However, what stood out most to me was the difficulty physicians have in making accurate diagnoses, even now, with all of our tools and experience. The article highlights how the N.I.H. is trying to advance knowledge about both specific illnesses and the diagnostic process through the Undiagnosed Diseases Program, and it brings home how complicated the jobs of physicians AND patients are when addressed a complicated array of symptoms.

A few weeks ago I wrote about how fractured and fragmented our current of system of diagnostics are, and the article on Summer Stiers included a great discussion of this problem. Forgive the long quote - this is from page 5 - but I found this so interesting, esp in light of diagnostics in the field of autoimmunology (italics mine):

The balkanization of medicine accounts for an increasingly constrained approach to diagnosis — an approach that... is defined by a specialist’s focused knowledge rather than by some broader understanding of the patient. “This is partly because of how medicine is taught — how it has to be taught,” said Kathryn Montgomery, professor of medical humanities and bioethics and of medicine at the Northwestern University medical school in Chicago, when we spoke by telephone. “Doctors get educated to solve problems in their own terms. They’ve got only a certain set of information and experience at their disposal.”

Few physicians are trained to look at the patient as a whole, Montgomery says, with the exception of generalists like internists and pediatricians. ...

But the problem is not just overspecialization, Montgomery says; it’s the complex nature of diagnosis itself, and the difficulty of trying to teach the process in medical school. Because diagnosis involves so many intersecting and often incompatible parts, medical students have traditionally been taught to do opposite things at once when they meet a new patient: suspend judgment, but form an initial impression; look for a single diagnosis to explain all symptoms, but watch for co-morbidities; avoid the anecdotal, but pay attention to stories; expect the diagnosis to be a common disease, but don’t forget the rare ones. This dissonant approach was recently modified in some medical schools, according to Montgomery, with students now taught to begin with a “working diagnosis” that they refine as they accumulate data that either confirm or refute their first guess. But while the working-diagnosis method might clarify some things, Montgomery worries about what might be lost: a sense, as she wrote in her 2006 book, “How Doctors Think: Clinical Judgment and the Practice of Medicine,” of an alternative pathway. Because of the inherent contradictions traditionally taught in medical school, she wrote, new doctors have been able to achieve “a certain balance, a consciousness that, no matter which way they may work through a diagnosis, there is another way.”

As patients, we see similar contradictions in our roles of finding the right doctors. Do I find an older doctor... someone with lots of clinical experience? Or should I turn to someone who is fairly new out of school, who has fresh knowledge on the most modern techniques and research? Do I find a generalist or a specialist? Do I look to someone who is alternative in their approach, or have two separate doctors, one representing the "western" approach and one representing an alternative approach? When meeting a doctor for the first time, do I tell them my whole complicated history, or just focus on the day's issues?

This makes me more and more convinced that I am my own boss re: my health (see "I'm canceling everybody"). Doctors, by the very fact that they are human with limited brain-space, are fallible. We have to be our own agents, and rely on our doctors as we would rely on consultants. We have to be our own Chief Information Officers.