Preventive Medicine Column
Dr. David L. Katz
In my last two columns, I explored just a little of the statistical underpinnings of medical decisions. My conclusion was that such decisions should be patient-centered, not test-centered. The humanistic case for this position is fortified by the statistical case.
But patient-centered care may not take the matter far enough- because a “patient” is still generic. Truly good medical care must be, in a word: personal. Not about a patient in general- but when you are the patient, all about you.
This is, superficially, a very obvious contention. But focusing care on individuals is difficult at best, and at worst, downright impossible. If it were otherwise, care that’s all about individuals might actually prevail.
The reality is that in the absence of population data and experience, we would have no idea how to care for patients. What we know how to do for patients is based entirely on patients who have come before. Textbooks are all about historical experience with patients past. How do we know that A treats B? Because of the historical parade of patients with B who have responded to A, while not responding to other remedies.
We know which belly pain is likely to be appendicitis, because we know which patients, with which symptoms, historically wound up having a hot appendix. Ditto for chest pain and heart disease, cough and pneumonia, headache and meningitis.
Much of medical decision-making comes down to determining what group of prior patients a current patient is most like, in order to select a course of action most likely to replicate the best achievable outcomes. Aristotle described an “eye for resemblances” as the genius of the poet, referring to simile and metaphor. I have made the case in a textbook that an eye for resemblances is fundamental to clinical acumen as well.
Evidence-based medicine, in other words, is population-based medicine. The care of any individual patient is based on the experiences of patients who have come before.
And while to some extent that is unavoidable, it is also a great peril. It may be that on any given day, a patient will respond just as predicted- and individualized care, and population-based care, will blend seamlessly. But…it may just be that on any given day, a patient may come along who- through no fault of his or her own- simply isn’t like any patient who has come before! This is true of people with rare diseases, orphan diseases, and inscrutable syndromes for which a decisive diagnosis proves elusive.
I have known many such patients over the years, some of whom remain undiagnosed to this day, after running a gauntlet of specialists, uber-sub-specialists, and gurus. Most such patients are frustrated, and some are despondent- because the medical profession has the tendency to question the validity of any diagnosis it cannot clinch with an assay or scan. But of course, many undiagnosable conditions of the past are diagnosable today. We should not be so arrogant to think this history won’t repeat itself, turning today’s enigmas into tomorrows iron-clad diagnoses.
My passions on this topic have recently been stirred by my on-going correspondence with Alexia Norton-Jones. Alexia is the grandchild of W.W. Norton, founder of the publishing house by the same name. Alexia also suffers, as have other members of her family, from a rare form of a rare disease: hypokalemic periodic paralysis. She has shared some of her clinical experiences with me, and they were, in a word, appalling.
It is of course no fault of Alexia’s to have a condition most clinicians will never see, and many have not heard of. It is not the fault of any patient to be the anomaly, the rare and mysterious case. Any given rare case is rare- but when they are all summed up, there is a large population of patients who are all too often punished for stumping the doctors.
But when stumped, we can, and of course should, still…care, in both the standard and clinical sense. We should give the patient the benefit of any doubts. We should turn more readily to “perhaps I’m ignorant,” than to: “perhaps this patient is flaky.”
Periodic paralysis is just one example of the many enigmatic conditions that deserve our compassion and our respect in the absence of our comfort and full understanding.
We clinicians will continue to base what we usually do on the patients who have come before; we have no good alternative. But we must make room for the unusual patient whose like we have never yet seen. To do so, we must get past the limits of a population-based perspective. We must, always, get personal about the care we render. And when the person in question is you or someone you love, you should insist on nothing less.
Dr. David L. Katz; www.davidkatzmd.com