How to Be a Smart Patient

Calling all patients: beware the standard of care! And never forget: it's your body, your health, your life. The doctor works in your service. Everyone else in the system may forget it, but you shouldn't: you are the boss!

Any number of studies or exposés might be cited to make the case that you must be a vigilant and assertive patient to get reliably good care, let alone the best possible care. But we may satisfy ourselves with just recent research, and recent headlines: one study in JAMA demonstrating that axillary lymph node dissection in early stage breast cancer, though routinely done, does not improve survival; and another study, published in the The American Journal of Surgery, showing that excisional breast biopsies are routinely done when far less invasive, and far less potentially disfiguring needle biopsies would suffice.

Actually, I can't resist -- I'll cite another more vintage example as well: studies demonstrating that rates of hysterectomy vary widely by region of the country, suggesting that the threshold for removing a woman's uterus is a matter of prevailing medical 'fashion,' more than scientific evidence.

As a doctor, I would love to be able to say that these and numerous other such examples (some pertaining to men, too, by the way -- although it may well be that medical mediocrity imposes a greater overall burden on women, more's the shame) are statistically trivial and rare exceptions to the rules of engagement. I would love to say that, but I can't.

I can say -- and hasten to -- that some of the smartest, most dedicated people I know are in the medical professions, and that many docs are tireless in their pursuit of the very best they can give their patients, and the best they can get for them. Altruism truly does rank among the qualities that entice people into the medical field, when they could surely make more money faster and get a lot more leisure time into the bargain doing something else.

But several factors conspire mightily against the relentless pursuit of perfection we all like to imagine motivates every moment of medical practice. Prominent among such factors are: human fallibility; the surprising standards of standard care; and the moving target principle. I will address each in turn.

Human fallibility is self-evident. Doctors, and other health professionals, are people. People who get tired, fight with their spouses, get discouraged, are in a rush, get distracted, and so on. Much of what goes awry in medicine comes down to this: to err is human. To doctor, and to nurse, is human, too -- and alas, they overlap all too often.

The surprising standards of standard care actually relate to human fallibility. The surprise is that while we hear about the 'standard of care' or 'the standard of practice' as if they represent some kind of pinnacle, what they actually represent is ... what's standard. The surprise is that the expression is entirely honest.

We are all prone, not unreasonably, to think that the standard of medical care, with life and death on the line, must be at the pinnacle. But that really can't be; standard is average. If average were at a pinnacle, then there would have to be a higher pinnacle representing above average -- and that would be the pinnacle we would all want, and expect. Standard is, inevitably, well below the pinnacle about which we all fantasize -- and I regret to say that I have seen far too many examples over the years of care pulling the average/standard down than I care to recall.

Don't assume that standard is good enough. Apparently, excisional breast biopsies are standard when fine needle biopsies would suffice.

Third, and finally, is the moving target principle. This is not about the fallibility of any given human -- it's about our collective fallibility. Much of the science we now know to be true would have been seen as heresy at some point in the past. And some of what we think we know presently will prove to be primitive at best, heretical nonsense at worst, at some point in the future -- perhaps tomorrow.

The study demonstrating what we thought we knew about lymph node dissection being wrong is an example of a moving target; studies of hormone replacement therapy at menopause another; the belief we need to treat all prostate cancer another; the notion that peptic ulcers are an infectious disease another still.

Biomedical science evolves, and that is good. But it also means we need a good dose of humility in medicine, because often -- we're not sure. Even when we think we are.

The best way to deal with all of this, in my opinion, is for you to be the boss. Don't get carried away -- it's improbable you know as much about your condition as your doctor; it's almost certain you know less about medicine overall; and there's a pretty good chance your doctor is at least as smart as you. But it is your body, your health, and your life. You are the boss -- so act like it!

Do not just go with the flow. Be courteous, but always assertive. I recommend the following questions as a matter of routine in response to any recommended test or treatment:

Is this the lowest risk option? If not, does this approach add benefit that more than offsets the risk? Is this the test or treatment you would have if you were in my shoes? Is this the test or treatment you would prescribe for a loved one in my shoes? Is there another option with less risk, more potential benefit, or both -- that we should consider? Are you sure I need another test, and will the results change my treatment options? Can you tell me how? Are you sure I need a treatment, and will it reliably change my results for the better? Can you tell me how? How confident are you in this recommendation you are making?

A lot of truly good information can be gleaned from such an exchange, but actually -- it serves another purpose too. It slows down a doctor who may be harried and hurried, and forces her/him to deal with you as ... a person, rather than a patient. It may be that an emphatic introduction of the human element into the medical equation is the best defense against human fallibility. Not a perfect defense, but good nonetheless.

I have coined the term "intuistics," a blend of statistics and intuition, to describe an attribute I believe we all have: the ability to recall the patterns of prior actions and outcomes, and use them as a basis to judge whether what is going on now feels right. We tend to think of it as intuition, but I think it's often intuistics, which is based on data we don't know we know -- and thus more powerful. When that voice in your head whispers "I'm not so sure about this..." listen to it! It is probably intuistics at work behind the scenes.

And while at it, consider these two principles of intuistics: the better the question, the better the answer; and, the more you know, the better you guess. Ask your doctor good questions to force good answers. Then leverage those answers into a better informed "guess" about the best course of action.

The standard of care is just ... standard. Make your standard better than standard. Be the boss.

Dr. David L. Katz;