This is the first of several posts about how to read the medical news. How can a non-physician interpret the latest breathless bulletin about some new breakthrough? Are there commonsensical tests one can apply to the story to see how valid it might be? There are. One useful notion is that we have ways of grading the validity of different sorts of evidence. I’ll get to those in later posts. First, it is useful to know where we’ve come from.

Medicine is not totally a science. It makes use of science and struggles as best it can to adhere to scientific principles, but medical knowledge, perhaps because it involves humans, will always contain an element of human fallibility. This is more true of some aspects of medicine than others. For example, we understand the science of how a damaged bone heals far better than we understand the science of how a damaged mind does. Medicine is occasionally more or less science-inspired intuition. A good share of the frustration non-physicians have with medicine stems from this misunderstanding of what medicine fundamentally is. Yet in spite of all the inherent vagaries of medical practice, the fact remains: we can know things, there are tools to help us do this, and these tools are based on the scientific method.

Throughout most of its history medicine had no scientific footing at all, and for centuries it was as much a branch of philosophy as it was anything else. The theories of how the body worked were fanciful notions with little or no basis in observed reality. The Scientific Revolution changed that. Ever since William Harvey decided in the early seventeenth century to test thousand-year-old teachings of how the blood circulated by actually looking at what happened, the principle of experimental observation has been a foundation of medical science. Although the accepted ideas of disease causation remained outlandish to our modern eyes for many years after Harvey’s pioneering experiments, the world of medicine had still changed profoundly and permanently. Henceforth the best physicians would actually test to see if their theories had any basis in observed reality.

For Harvey and the thousands of medical researchers who came after him, if they had a theory about how the body worked, they tested it with experiments. But it is also important to understand we can use sound principles of scientific observation even when we have no idea, no theories, about why things happen. For example, we can compare two ways of treating a disease though we have no notion of what causes the disease. It is often the results of such naïve observations which lead to theories of disease causation, theories which can then be tested with further observations. But we can still reach some useful conclusions about what works and what does not work without having any understanding at all of the reason why.

The vital distinction to make is this: although we can have good observations without underlying theories, we cannot have useful theories that are not based upon some kind of valid observations. What does this principle mean for today’s parents? From the outset, parents should demand of anybody making a claim about how children’s bodies work that they show good evidence in support of their theories. And good evidence can be hard to find.

The physicians of Roman times, whose theories Harvey disproved, saw no need to provide any experimental evidence at all. These days parents hear conflicting evidence everywhere; all the partisans in these debates have evidence. The problem is to decide among the conflicting claims whose evidence makes sense and whose does not. Can parents do that? Again, without the need to make a biostatistician of anyone, I believe they can. What they need to learn, and then practice, is how to look critically at medical claims.

The first step is to understand that not all evidence is equal, even if the people collecting it wear a long, white coat and have degrees after their names. Like good detectives, we need to weigh the validity of different kinds of evidence, and medical scientists have established a hierarchy of kinds of evidence to help decide which is the most likely to be correct. The hierarchy runs from least reliable to most likely to be right. Parents may be surprised to learn the least reliable category is expert opinion, what an individual expert or even a committee of experts say is correct. Next in believability comes various forms of what are called uncontrolled studies, and most reliable are what are called randomized, controlled trials (RCTs).

You will read about the first of these, expert opinion, in the next post.

I’ve written before about how children from poor families have a higher chance of needing PICU care than do children from more affluent families. Eligibility for Medicaid is a good marker for this; nearly half the population of most urban PICUs is made up of children on Medicaid, even though the national average (it varies a little from state to state) for children on Medicaid is about 20%. So poor kids are more likely to become critically ill.

Now a new report from the Robert Wood Johnson foundation, a renowned health policy organization, lays out how poverty correlates so closely to poor health. This chart is the most telling. It measures a somewhat vague quantity, something they call “children in less than very good health.” They obtain this value by surveying parents, so you could quibble about the validity of whatever it is the term measures. That quibble would make sense to me if the numbers weren’t so striking.

But they are striking. For example, among white, non-Hispanic children, 20% of poor children have “less than very good health,” compared with 6% of well-off children. The differences among black and Hispanic children are much more dramatic. Nearly 50% of poor, Hispanic children are not in optimal health.

What this means to me is fairly obvious, and it has been obvious for a long time — health status is linked to socio-economic status. We shouldn’t need a study to tell us that, but it is helpful to have such a graphic demonstration of the effect. I’m sure it’s partly because poor families can’t afford health insurance. But that isn’t the whole story — all of these poorest children, the group with the most severe health problems, would qualify for Medicaid, even in the states with the most stringent requirements.

Thus whatever we do about healthcare reform will be closely linked to what is happening in the economy. Perhaps the best thing we can do for healthcare is reduce poverty.

There is a long tradition in folklore, one shared by shamans and occultists, that knowing the true name of something gives you power over it.

Many years ago I had a very sick patient in the PICU who one morning, totally out of the blue, broke out in a bright, red rash all over his body. The boy had many critical problems already and, although the rash didn’t seem to be causing him any additional difficulties, it was dramatic. I worked my way down the list of usual things that cause such rashes and nothing seemed likely, so I asked a skin expert, a dermatologist, to come and take a look at it.

The dermatologist, a distinguished professor in a three-piece suit, gravely looked at the rash, removed his half-glasses, and pronounced that the child had “a generalized erythroderma.” I was then a bit rash myself at times, so I demanded: “I can see his skin is red all over (which is what “generalized erythroderma” means translated into English), but what is the rash from?” The professor was not amused. He had named the thing — that alone was useful and important.

What I call “Rumpelstiltskin syndrome” is the tradition in medicine that putting a name to a disorder, for example a set of symptoms, goes a long way toward controlling the problem because it gives our minds power over it. It is a little like the fairy tale in which Rumpelstiltskin conceals his name from the miller’s daughter. She is in his power until she happens to learn it, after which she is on top of the situation. No one wants to be a diagnostic enigma — we feel better when we have a name to call our malady, even if we can’t do anything about it.

Classifying diseases and relating them to one another, and in the process giving them names, is an ancient tradition in medicine. Called nosology, physicians tried, like botanists studying plants, to derive a sort of family tree of diseases. Even if there was no effective treatment, at least naming the disease would allow prognosis, the art of predicting what will happen to the patient. That is a useful thing. For a very long time in medical history it was nearly all physicians had to offer.

It also can be a first step in figuring out the cause of a disease. For example, before we knew anything about the human immunodeficiency virus (HIV), doctors identified patients with an unusual cluster of symptoms and signs and called the problem acquired immunodeficiency syndrome, or AIDS. Now we know what causes AIDS, but at first all we could do was describe and name it.

So, like the miller’s daughter and Rumpelstiltskin, knowing the ‘true name’ of a medical condition is helpful. But it also is true that that the simple naming act makes us feel better about the situation, if only because now we know what to call it.

Here is another post taken from my newest book, How to Talk to Your Child’s Doctor. This one concerns what I call the judge.

All physicians naturally make judgments regarding the parents they are interviewing. For example, we assess how accurate and plausible their history is. We try to decide if they are telling us the whole story and, if not, if they are inadvertently or deliberately holding something back from us for whatever reason. All experienced physicians do this. What we rarely do, however, is judge the parents’ worth as people, as individuals apart from their children. There are exceptions to this, like all blanket statements in medicine, but we cannot do a good job abiding by the important ethical principle of equal care for all children if we categorize parents as good or bad. After all, children do not choose their parents.

The inappropriately judging physician runs the risk of allowing his opinion of a child’s parents to get in the way of his taking proper care of the child. His judgments might be condemning or laudatory; either type can cause problems because they lead to assumptions that may not be correct. Physicians should be especially vigilant about the dangers of inappropriate judging when there are social differences between them and parents, such as ethnicity or language. All humans have the capacity to be good parents. I have seen convicted felons who are better parents in comparison to people who are social pillars of their communities.

Interestingly, judging physicians sometimes err by overvaluing the position of the parents. One sees this occasionally when one or both parents are medical professionals. There is a real risk for miscommunication if the evaluating doctor assumes that parents’ medical or nursing knowledge means they are perfect observers and historians. When their children are ill, parents who are doctors or nurses are parents first and need to be treated that way.

Unfortunately, there is not much advice I can offer if you believe that a physician’s judgment of you as a person is interfering with his assessment and management of your child’s medical problems. As with other potential communication problems between parents and doctors, confrontation is rarely a good strategy, since a physician guilty of this communication problem is unlikely to admit it or even recognize it. My best advice is, armed with what you have learned in the previous chapters, to do the best you can to ensure that your child’s evaluation—the history, physical examination, and laboratory tests—is as thorough as it needs to be, and that the doctor, whatever you think of him, explains things completely.