Egotism is a common trait among doctors, although most of us keep it under adequate control when dealing with patients. Throughout this book, the ideal doctor-parent encounter has been described as a collaboration among equals, each of which brings expertise to the exchange; the doctor knows medicine, the parent knows the child. This is the ideal, although sometimes the reality falls short of it. The way our medical system is now structured gives more power and influence to the doctor side of the relationship than the patient side. As you read in chapter 7, things were not always this way; a century ago a surplus of doctors with treatments of doubtful usefulness scrambled to attract patients. These days, however, physicians have many more therapies that actually work, plus the benefit of an enormous medical establishment behind them. So now doctors are usually the ones deciding who gets what treatment. In spite of that fact, good, experienced doctors will do their best to use their power over patients lightly, always inviting parents and patients to share in the authority.

Physician egotism can get in the way of good communication in several ways. A simple manifestation is the tug-of-war over whose time is more valuable, the doctor’s or the parents’. A good example of this conflict is the doctor who schedules far more patient appointments than he can accommodate in a day, then seems unaware of how keeping a parent waiting for hours can poison the atmosphere even before the evaluation has even begun. Parents usually understand long waits when they take their child to the doctor for an unanticipated acute problem. If the waiting room is full of children just like theirs, there is little the doctor can do except see them each in turn. But the subspecialist who packs his waiting room with too many scheduled patients is proclaiming, in effect, that his time is far more valuable than that of parents, who often must take off a full day’s work to bring their child to see him.

The egotistical doctor is one who tends to forget that the patient is the center of everything, the reason the parents are there in the first place. He forgets that the encounter is about the child, not the doctor. This attitude can show itself in a persistent tendency to turn the subject of the conversation away from the child and toward the doctor. The result may be harmless, as when a garrulous doctor is genuinely trying to relax the parents and their child with a friendly conversation about other things, or it may be more toxic, as when a doctor constantly talks about himself and what he does. The latter can be particularly trying to parents who have waited a long time to see the doctor, only to find their brief time with him taken up by extraneous chatter.

Although it can be annoying to parents, excessive egotism in your child’s doctor is generally a minor issue in the big picture of getting your child the evaluation she needs. I say this because, although there are exceptions to everything, for the large majority of doctors I have met who are more egotistical than the average, their self-centeredness does not get in the way of their medical skills. In fact, some subspecialties, such as high-risk surgery, almost require the physician to have a huge ego if he is to perform such surgeries effectively .

So it is largely a matter of the personal taste of the parents. If you find yourself irritated when talking with an excessively egotistical doctor, and if you think this is interfering with his proper evaluation of your child, the best thing to do is to be persistent in turning the conversation back to your child at every opportunity. Of course, if you are really irritated by his manner or the way he treats you, do your best not to see him again.

The fee-for-service model, however, has long had critics. The most fundamental objection is that it rewards doctors for doing things. In an environment like that, one in which the more one does the more he gets paid, the doctor is tempted to do things that don’t need to be done, or choose the thing to do for which he gets paid more rather than the thing that pays less. In the ideal situation, of course, the doctor won’t consider those things–rather, he will put the patient’s best interests first. But doctors are human, and fee-for-service presents a doctor with a fundamental conflict of interest.

The alternative to fee-for-service is some sort of payment system in which the doctor is paid a salary that is the same no matter how much he does. This is currently done by some large practices, including the Mayo Clinic. Critics of this salaried system believe that, without financial incentives, doctors will simply not work as hard. Other physician groups blend together the two approaches, with a salary supplemented by some sort of bonus for doctors who do more.

The debate is more than a financial one–it is also a philosophical one. Most free market enthusiasts strongly support fee-for-service; those who favor tighter regulation of medical care, often including one of various single-payer models, are typically open to salary-based payment models. Salary-model systems also are frequently used by Health Maintenance Organization (HMO) systems.

Historically, organized medicine has been strongly opposed to paying physicians by any other method than fee-for-service. Seventy-five years ago, physicians who accepted salaried arrangements were ostracized by their peers and sometimes even penalized. This view has changed to some extent, but I think it is still fair to say that most American physicians favor traditional fee-for-service.

For myself, I favor a salary model (or salary plus a modest incentive for extra productivity) for what I do. I work in the field of intensive care, which lends itself well to this. Other specialties are somewhat different. My job, in effect, is to be like a firefighter waiting in the firehouse–if the PICU is busy, I work harder; if there are less patients, I can ease up. After all, we pay firefighters whether or not they are fighting a fire.

I see no reason why physician payment strategies must be all one thing or all another. It seems to me that whatever evolves from our current chaotic situation could find a place for both approaches. Hard work should be rewarded. However, and this is a big however, we need to understand the inherent conflict of interest of traditional fee-for-service medicine. Also, not all rewards for hard work need be financial ones.

We need to look closely at just why a particular individual is considered an expert, and by whom. Credentials are important: where did the person obtain her training, where does she work now, and what is her standing among her peers? These seem obvious questions to ask, but these days an astonishing number of people with dubious or no credentials can write a book, put up a website, or start a blog, and, if they are persuasive marketers, can convince others they are experts. Fortunately for parents, the same wide-open quality of the internet allows one to search the background, credentials, and accomplishments of any putative expert. Wise parents will do this as a matter of course before deciding whether to take the expert’s advice on any important matter about their child’s health.

Experts who advise you to do one thing or another with your child typically base their advice to you on their own interpretation of the available medical research. They have the knowledge and training to understand the often esoteric medical literature. In addition, most experts themselves do research in the relevant field. Those are important and useful things. However, there are still good reasons why we should regard such opinions as the worst kind of data — better than nothing, but sometimes only barely so.

For one thing, the reason an expert holds a particular opinion may be because she was taught that way by her teachers, who may have, in turn, been taught the same thing by their teachers. Medicine is practical and empirical enough that such received, traditional opinions will not be tossed out unless they are consistently wrong. It is also true we physicians venerate our medical forebears to the extent that misguided opinions can occasionally persist long after they should have been discarded. So sometimes the answer to why doctors do something a particular way is that we have always done it that way.

Experts also form their opinions based upon what they have seen in the past. If their experience is long, often they have seen quite a few instances of whatever is under discussion, and that experience should count for something. On the other hand, memory is a tricky thing; sometimes we recall things in ways that can ultimately prove misleading. For example, the more striking and dramatic things tend to stay in our minds better than the more mundane things, and medical experts are not immune to this phenomenon. For example, I know that I remember unusual manifestations of certain cases for decades, and this inevitably colors how I approach the next child with that particular problem. Even though I know the case was unusual, I naturally think of its circumstances whenever I care for another child with whatever the disorder was. This is an example of what we call recall bias.

There are other kinds of bias that may affect the judgment of medical experts, and some of them are not innocent things like tricks of memory. Medical experts are no different from other kinds of experts, such as foreign policy pundits or stock market analysts, in that we, too, may have agendas that are not obvious to parents listening to our advice. Any controversial subject will lead to partisanship, and medical debates are no different. Parents considering the advice of medical experts should be alert to what a particular expert’s agenda might be. This is not necessarily a sinister thing; I think the great majority of experts advocating one position or another do so because they truly believe it is the correct one. But it is still a real thing.

Sometimes, however, medical experts may have agendas that are not so innocent. For example, there have been recent examples of experts touting one treatment over another when they have an undisclosed interest in the outcome. The conflict of interest could be intellectual, such as past friendships or associations with researchers of a particular treatment, or they could be crassly commercial. The ethical boundaries are, in theory, quite sharp, but there have been well-known examples of medical experts recommending a particular treatment when they have a financial conflict of interest regarding the outcome.

The best experts, of course, are the ones who tell you the basis of their opinions. They do not just pontificate about what is best for your child — they tell you how their reading of the best evidence led them to their informed opinion. They interpret for you the meaning of the scientific evidence. On the whole, most medical experts will do this for parents. Even so, it is a good thing for parents not to take whatever the experts say entirely on faith; it is better to have some grasp of how medical evidence is collected and analyzed. And besides, even experts can be wrong.

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.

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.

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.

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.

This is a common scenario for having something blocking the bronchus, the breathing tube, that leads to one of the lungs. In toddlers, it usually means there is what we call a foreign body, such as a peanut, a bit of popcorn, or a plastic toy down there, because toddlers are famous for putting anything in their mouth. If they suddenly breathe in, the object can end up where it shouldn’t be. After listening to the child’s chest, I assumed this was what had happened. So had the emergency department physician.

The treatment for an inhaled foreign body is not trivial. It requires the child to be anesthetized and have an instrument called a bronchoscope pushed down into his lungs looking for the object. Once found, we have attachments to fish it out. Before he arranged that, the emergency physician wanted to be surer of the diagnosis, and there were a couple of things that didn’t fit.

For one thing, no one had seen the child put anything in his mouth and he hadn’t been around any of the likely culprits. For another, his breathing problems came on over a couple of hours or so, not suddenly as usually happens with an inhaled object. Finally, although these objects can end up in either lung, they usually go to the right one, not the left. For these reasons the emergency doctor had ordered a couple of tests: first a chest x-ray, and then a CT scan. Neither one of them suggested a foreign body. In fact, they showed some abnormalities in both lungs.

Meanwhile, the child was about the same. He still had moderate difficulty breathing and needed oxygen. When he got back from the CT scanner, however, his examination findings had changed — now you could hear some air getting into his left side. More importantly, now it was easy to hear wheezing throughout his lungs. He was having an asthma attack.

This was a simple case, and the child did fine after some breathing treatments. One reason this case was interesting is that it illustrates an old medical saying, one which warns us that if we see something odd, it’s much more likely to be an uncommon manifestation of a common thing than an uncommon thing. Asthma blocks airflow out of the lungs. Although it usually does this more or less equally throughout the lungs, in this case it didn’t, at least at first.

But another reason it was an interesting case is that it reminds us that each of us is unique, and diseases can affect each of us differently. Usually these differences are small, but sometimes they are large. It’s also why you often find that the more experienced the physician, the more unwilling he is to predict with absolute certainty what will happen.

The question of quality of care (and the related one of getting good value for our healthcare dollars) should revolve around outcomes — how did the patients fare? After all, that’s the bottom line. However, that question can be difficult to answer, and the reason for that difficulty relates to our essential humanity — we are all unique. Thus the same treatment applied to different persons, even if they have the same disease, can yield different results, because no two individuals truly have the “same” disease — it expresses itself differently in each of us. Still, we can’t use this uniqueness to dodge the issue; clearly, some things work and some things don’t, and some facilities do them better than others. How can we sort them out?

A huge issue for outcomes research is case-mix. That is, the only way to compare how one PICU does with another is if the patient populations are nearly exactly the same. If they aren’t, it’s not a fair comparison. We generally can compare very large PICUs with each other because they care for so many children that small case-mix differences wash out. But that may not be not true for smaller ones, and even among the large ones there are differences in the sort of children they serve.

Since outcome research is so hard, what is often done is to use a proxy for it, something called a process marker. The notion is that one can monitor how a hospital is following a recommended process, such as standard procedures for immunizations. If the hospital is doing well at that, by assumption it probably is doing well at other things. But that is an assumption, although there is research to support it. You can find examples of this here and here, at the National Quality Measures Clearinghouse.

One of the most rigorous outcome measurement programs is in the area of organ transplantation. This is because the organization that regulates how precious organs are used demands that all hospitals submit reports of how well their patients are doing. You can even read and compare these for yourself here. There are still problems of case-mix, since hospitals vary in choosing precisely what patients they will transplant, but overall the system gives great transparency to what is happening to patients.

So back to the original question: how can you know a PICU is a good one? If you dig (and have the time), you can find out how well a hospital does with complicated, planned procedures like organ transplants or heart surgery. But most children land in a PICU from some acute, unplanned condition. In that case all a parent can realistically do is check the credentials of the facility (such as here) and of the doctors (such as here and here). One day we will have more, since both the public and those who pay the medical bills — insurance companies and governmental agencies — are rightly demanding it.

Doctors who disparage, or even ridicule, what parents tell them are, fortunately, rare. Nevertheless, sometimes parents may infer from what the doctor says or how he acts that he does not value what they are telling him, even though he did not mean to imply such a thing. All physicians have had the experience of overly touchy parents inappropriately assuming from our questions that we do not respect their ability to give a useful answer. This is prone to happen in situations where parents, already agitated over their child’s illness, are concerned that the doctor believes at least part of their child’s problem stems from what the parents did or did not do. A good, experienced physician easily senses this defensiveness in parents and does or says things to reassure them; the disparaging physician does not bother, since he assumes parents are usually part of the problem anyway.

Doctors with this kind of poor communication skill overlap those who are disbelievers, since both place little stock in what parents are telling them. The disparager is a little different from the disbeliever, however. Whereas the latter may actually be contemptuous of parents’ ability to give a good history, the former usually carries in his manner some of the old medical paternalism; the doctor knows best, and the parents know very little that is helpful, but that is not their fault—they cannot help themselves.

Parents may meet a doctor with this attitude, although, truth to tell, such a physician is more often identified out of parental earshot, since most have the good sense and manners not to act in an obviously disparaging way toward parents. These doctors generally confine their comments to colleagues or nursing staff, although they are occasionally surprised by how good parents’ hearing is through a partly open examining room door.

What should you do if you meet such a doctor? Unfortunately, and as with the related category of the disbelieving physician, you as a parent can do little to change this doctor’s personality type. You can, however, be aware of what is happening with the interpersonal dynamics of the medical interview. This insight should be all you need to understand that the doctor’s disparaging manner is not about you, the parent; it is about him, the doctor, and he probably behaves in a similar way to many other parents and patients. Try not to take it personally. Besides, as long as his medical skills are up to the task, he is still probably a good source to give the care your child needs.

You will not be surprised to learn that doctors who are disparaging toward parents are also often disparaging toward their medical and nursing colleagues. This can make parents uncomfortable as when, for example, a doctor who is seeing their child criticizes what other doctors have said or done. It is one thing to be honest and open with parents; doctors should not conceal from them things they have a right to know. But it is quite another thing to denigrate one’s professional peers. Doctors who habitually do this often seem to do so in order to make themselves look more important in parents’ eyes. You should be wary of participating in such a conversation.