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.
All good doctors learn to filter what parents say to them during history taking, to examine each parental statement for reliability, likelihood, and sheer outlandishness. Parents of sick children are a cross-section of humanity and, like all of us, vary in their observational skills, their ability to express themselves, and their tendency to exaggerate or minimize what they see. Parents, not being physicians, may not notice and comment on things a doctor would notice. Good doctors also understand that parents of sick children, especially very sick children, are stressed by their situation and sometimes rendered more than a little incoherent by that.
In spite of all these issues, the fundamental principle of medical interviewing is that parents are virtually always telling the truth as they understand it. They will not see things as through a doctor’s eyes (unless they have read my book, of course), but they will nearly always faithfully report what they see if the doctor is reasonably skillful at bringing out the salient points during the conversation. Unless a doctor has very compelling evidence to the contrary, she assumes goodwill on the part of the parents. What that means in practice is that parents who give disorganized, difficult-to-interpret histories are not intentionally trying to deceive her; they are simply doing the best they can to describe what they see. The disbelieving doctor is not inclined to trust the truth of that statement.
This variety of poorly communicating doctor can be a troublesome one for parents to deal with. She may seem pleasant in conversation, but this kind of doctor also may come across to parents as brusque, even antagonistic and confrontational in demeanor. Parents interviewed by doctors like this sometimes feel as if they are being cross-examined, not interviewed; instead of a two-way, mutual conversation, the encounter feels more like a grilling by a suspicious police officer. That is an extreme description, but it is one parents have used when telling me about unsatisfactory encounters with doctors. Milder metaphors I have heard from parents about these situations include feeling like a teenager being quizzed by a parent over staying out too late, or like a student who has mislaid his homework assignment.
There are several underlying themes for this kind of dysfunctional conversation. One is that parents feel as if the doctor does not really believe what they are saying, as if the parents need to produce some objective evidence to prove that what they are saying is true. The nuance can be subtle, but nonetheless obvious. If most doctors hear a parent say, “Johnny had a fever,” they will follow up by asking how high the fever was. If the parent’s reply is something like “I didn’t take it—he felt hot,” most doctors note that fact and proceed with the interview. In contrast, the disbelieving doctor is inclined to say something like “Why didn’t you take his temperature?” or “Why don’t you have a thermometer?”
Physicians inclined to disbelieve what parents say to them are, at root, manifesting the old tendency for physicians to set themselves above the patient. Treating what parents have to say as being at best uninformed, at worst outright deceptive, is another example of how some doctors regard themselves as superior to others. It is another face of medical paternalism. From what I have seen over the years, I suspect that this attitude and behavior is a little more prevalent in pediatric practice than in other kinds of medical encounters because many parents of infants and young children are, in comparison to the doctor, themselves young. An age disparity between parents young enough to be a middle-aged doctor’s children and the doctor can make the doctor behave a little like a parent herself in how she treats her patient’s parents.
What should parents do if they find themselves meeting this kind of doctor? My best advice is to realize they are unlikely to change the doctor’s behavior much, and that overt confrontation generally does not work well because it tends to confirm in the disbelieving doctor’s mind her impression that parents, rather than being allies in the child’s evaluation process, are more often unreliable adversaries. It works better for parents to recognize what is happening and respond by taking extra pains to be precise and consistent in what they say, perhaps using statements like “This may seem strange to you, but . . . ” or “I know I should have paid more attention to the rash, but it seemed to me at the time that . . .”
An extreme tendency to disbelieve what parents are saying is a bad trait in a physician, and it likely will impede her ability to do the best job for the child. But as with other kinds of poor physician communicators, I think most disbelieving physicians are not fully aware of how their manner interferes with their interactions with parents. Still, it is not a parent’s job to educate the doctor about that, and it is probably best not to try.
How doctors treat patients’ need for information has changed significantly over the past decades. Sixty years ago medical practice was much more paternalistic than it is now, although some would say it continues to be so in important ways. Still, not too long ago it was common for doctors to tell patients or their families next to nothing about what was going on. The presumption always was: the doctor knows best. A corollary to this attitude was that telling patients and families the truth, accurately explaining the ins and outs of what was happening in a way they could understand, placed an unreasonable psychic burden on them; only the doctor had the strength of character to bear this burden.
As a profession, we no longer espouse that viewpoint. These days we maintain, or ought to, that patients are the ones who control their care. This does not mean patients call all the shots and select all aspects of what the doctor will do, but it does mean patients are in charge of important decisions affecting their bodies. For children, this means parents make the key choices.
It is the doctor’s obligation to explain to you, in a way you can understand, what is wrong with your child and what he proposes to do about it. Sometimes parents feel as if they are imposing on the doctor, inappropriately taking up his time, when they ask him to convince them he is evaluating their child in the best way. This is decidedly not so. The doctor who is a nonexplainer can suggest such a thing to parents by either resisting their questions or by implying he is doing them a courtesy by answering them. He is not doing them a favor; answering their questions is part of his job.
Parents who find their child being evaluated by a nonexplaining physician should simply press him for answers until they are satisfied. There is generally no need for confrontation. In fact, I have observed physicians who are chronic nonexplainers actually think they explain things satisfactorily, and are genuinely surprised when told they do not. So most times the nonexplaining doctor is simply a variety of the poorly explaining doctor.
There are some physicians who do a reasonably good job explaining what they think is the problem, but who for some reason resist telling parents the details about the tests they are ordering. Doctors like this often say something to the parents like, “We’ll check some tests,” and then leave it at that. But it is parents who will be doing the lion’s share of the actual explaining to their children about what is happening, so parents need to know explicit details about what is going to happen. Any parent who has dealt with the constant “Mommy why?” of a five-year-old knows this well. So ask about those tests, particularly if they involve anything painful for your child.
Here is another post taken from my book, How to Talk to Your Child’s Doctor. This one concerns what I call the poor conversationalist. There are several common versions of this, and all of them have corresponding parallels in nonmedical settings. Often the most basic difficulty is one of manner. A good conversationalist is a person who, no matter what he is thinking, outwardly projects an air of interest in what the other person is saying. The doctor who acts distracted, hurried, or even uninterested gets the conversation off very much on the wrong foot, especially if parents have been waiting a long time to see him. This sort of doctor may avoid eye contact with you. He often continually writes while you speak; although most of us take notes during an interview, parents not unreasonably expect us to look up at them now and then.
A poor conversationalist is impatient to get at what he assumes to be the crux of the matter and will interrupt parents, cutting off their explanations. It is true the doctor typically directs the flow of conversation, but he needs to do this in a way that does not stifle it. If he is too heavy-handed, the result is a very one-sided conversational exchange, which can in turn result in suboptimal medical care for the child. Knowing how to guide and direct rambling historians is a delicate skill for physicians. The poor conversationalist, however, often errs on the side of demanding from parents short, even yes or no answers only, to the questions he asks. He does not want all the details. As he sees it, like Officer Friday on “Dragnet,” he wants “just the facts, ma’am.”
Besides being annoying, the doctor who is a poor conversationalist of this sort will miss things, occasionally important things, because there are times when it is the details that really matter. A doctor like this often glances at the child or the chart and makes an early, snap judgment about which way to go with the interview when it has barely begun. Already convinced about what is important, he may then interrupt parents who he perceives as wandering from the key points of the history.
Our innate personal conversational styles can also interfere with the process. These are things which, although causing little problem in other aspects of our lives, can interfere with our roles as physicians. Some of us mumble, others of us gaze at the ceiling when talking, and still others of us use convoluted ways of expressing ourselves. Some of us present ourselves as amiable conversationalists, others of us come across to parents as unduly grumpy. If you find yourself trying to understand what a soft-spoken, mumbling doctor with an irritating facial tic is trying to say to you, remind yourself this person may well be an excellent physician for your child, exasperating as it is for you to understand what they are saying to you.
Parents who find themselves opposite a physician who is a poor conversationalist for any of these or many other reasons often become frustrated, and sometimes angry. After all, you have been waiting to see this person, sometimes for hours, or you may have made this evaluation appointment for your child weeks in advance. Now your concern is to get the most for your child out of an interview that seems to you to be moving in an unsatisfactory direction: how can you do this?
I think the most crucial thing is to remind yourself that you and the doctor truly are partners in the diagnostic and therapeutic enterprise, and most doctors, no matter how harried and frazzled at the moment, realize and understand this if given the chance. If you, as a parent and as a partner with the doctor, feel the interview is going seriously off-track, there are concrete things you can do to restore its direction.
For example, show you know how important it is to present your child’s symptoms in the order they occurred, what they were associated with, and what made them better or worse. Be as precise as possible in your words. Remember to stick to one symptom or complaint at a time. A doctor who is already a marginal conversationalist often becomes an interrupting, controlling interviewer if he perceives a parent aimlessly wandering around with disjointed answers to his questions. Once an interview goes seriously awry in that way it is very difficult to restore the situation.
Several of my colleagues have told me I should again put up a series of posts from one of my books, How to Talk To Your Child’s Doctor, about how parents can understand and then deal with difficult doctors. Here’s the first — the physician who doesn’t do a good job explaining things.
A physician, like anyone, can be a poor explainer of things for several reasons, but foremost among these is the tendency to use medical jargon. This is not a problem unique to doctors. When I take my car in for repairs I often must ask the mechanic to explain what is wrong in a way I can understand. I have a rudimentary understanding of what the various parts of the engine do, and I even recognize the terms he uses to describe these parts, but I have little understanding of how the parts relate to each other and what can go wrong with them. Automobile mechanics often wrongly assume most people know more than they actually do about car engines. If you spend all day working with engines and talking with colleagues who are doing the same thing it can be difficult to grasp how confusing the subject can be to nonmechanics.
Physicians find themselves in an analogous situation. Most parents know about their child’s body and many of the ailments that can affect it in the same way I know about my car and what can go wrong with it. But even though we know the words for body or engine parts, someone explaining to us what is wrong with a child or a car should not mistake this passing acquaintance with the vocabulary as true understanding–explanations should be in plain, jargon-free English.
There is another way this situation is analogous to auto mechanics: often the non-mechanically inclined, especially men, believe they ought to know about car engines, even if they do not, and are reluctant to press for clearer explanations from the mechanic. So they nod wisely while the mechanic explains, all the while having little or no idea what he is talking about. Likewise parents sometimes feel as if not being medically knowledgeable makes them somehow poorer parents, and they are reluctant to press the doctor for clearer explanations when they do not understand what she is telling them. You should not let your mechanic do anything to your car you do not understand the need for; do not accept any less from your child’s doctor.
What should parents do if they find themselves with a doctor who is a poor explainer, either from her excessive use of medical jargon or some other reason? I think the best approach is to do as a doctor does when we take a history from parents who are vague and imprecise in their descriptions: we pause frequently and rephrase our questions in different ways, and keep doing that until we understand. Parents can do the same thing by stopping the conversation at intervals, restating in their own words what they think they are hearing, and then asking the doctor if that is correct. Thus a parent can respond to a murky explanation from the doctor with something like: “So, what I hear you saying is . . . . Is that right?”
The worst thing to do for your sick child is to imply to the doctor you understand when you do not. One way or another, make her explain it to you so you understand it. Make her draw pictures if necessary. When you insist on continuing the conversation until you comprehend everything you are not being a pest, you are doing your job of being a good parent.
Like many pediatric intensivists, I care from time to time for victims of child abuse in the form of what is often called “shaken baby syndrome.” This syndrome is a characteristic constellation of finds that happen when a strong person grasps a child around the chest and aggressively shakes the infant. It was first describe by Caffey, a pediatric radiologist, fifty years ago. The baby may have broken ribs from being grabbed tightly, but what really causes severe damage is the act of shaking. An infant’s head is floppy on the neck and the whiplash effect of snapping the head back and forth often causes bleeding in or around the brain and brain swelling. The skull may also be fractured if the infant’s head strikes a hard surface. Severe residual injury or death are a common result. The effect of the brain bouncing around inside the skull is illustrated in this image:
One of the hallmarks of shaken baby syndrome are retinal hemorrhages — areas of bleeding in the back of the eye. These result from the same pressure changes during the shaking that induce bursting small blood vessels in and around the brain. So one of the key things we look for when we suspect this form of child abuse are the presence of such hemorrhages.
Defense attorneys know this, and there is a small industry of crackpot “experts” going around the country testifying (for money, of course) in child abuse cases that these characteristic retinal hemorrhages may be from other things, particularly increased pressure inside the skull. I have been involved with and testified in several legal cases of this sort involving patients I have cared for. A jury, of course, consists of non-experts and they may be confused by such claims and counter-claims. So this new study is extremely useful to lay that bogus claim to rest.
The investigators asked a simple question: Can elevated pressure inside the skull (intracranial hyptension) cause retinal hemorrhages, or is that claim made by defenders of child abusers just nonsense? To answer the question they did detailed examinations of the retina, the back of the eye, in 56 children ranging in age from 1 to 46 months who had known, documented elevated pressure inside the head. None of the subjects were suspected to have been abused and all had conditions known to cause elevated intracranial pressure. These included hydrocephalus, intraventricular hemorrhage, congenital malformations, malfunctioning shunts, and the presence of intracranial space-occupying lesions (masses or tumors).
The authors couched their conclusions in the usual soft language of medical research, but the answer is clear — elevated intracranial pressure does not cause retinal hemorrhages. This new information will be very useful to those who deal with the tragic cases of child abuse.
This one isn’t really about critical care but I found it interesting. The over-the-counter sale of probiotics is a huge industry. They are heavily promoted on social media as a cure-all for a wide variety of ills. Probiotics are live cultures of what are often called “good bacteria,” and there are solid physiological reasons for recommending them. But, and this is a huge but, actual clinical data demonstrating their usefulness behind some well-defined disorders is pretty scant. Their potential usefulness in many of the ailments they are touted for is frankly absurd. And, if you’ve looked at them on the store shelf, they’re relatively expensive.
The concept of probiotics is simple. Our intestine, particular our large intestine, or colon, is absolutely stuffed with bacteria. They feed on the rich river of nutrition passing them by and some of them offer us direct benefit in return by synthesizing essential vitamin K, something we can’t do. The overwhelming majority of these bacteria do us no harm at all. In fact, just by being there they do us good by crowding out harmful bacteria. It’s been known for decades anything that disrupts this ratio of good to bad bacteria can be detrimental. Antibiotics, especially oral antibiotics, needed to treat an infection somewhere, such as child with an ear infection, also slaughter gut bacteria indiscriminately along with the offending bacteria at the site of infection. This can lead to problems. The idea of probiotics is to repopulate the gut with good bacteria. There are many preparations that can do this, including yogurt containing live cultures (not all brands do), lactobacillus, and a variety of similar products available over-the-counter. I prescribe probiotics in the PICU when I’m using powerful, broad spectrum IV antibiotics.
I think the role of probiotics in the way I use them in the PICU is reasonably well founded. Using them to help the diarrhea that can be associated with oral antibiotics also makes sense. But do probiotics help in ordinary pediatric gastroenteritis, the so-called “stomach flu” (it has no relation to influenza) which is typically caused by viruses? These patients are not receiving antibiotics. The presumption is that the diarrhea itself somehow disrupts what we call the gut microbiome and that probiotics restore the balance. Two recent studies in the New England Journal of Medicine (here and here) address this question important practical question.
As you would expect from that prestigious journal, the studies are rigorous, placebo-controlled trials. This means subjects were randomly assigned to either the treatment group (which was the probiotic ) or the control group (which was an inert placebo). Neither the families nor the investigators knew which patient was in which group until the code was broken at the end. The subjects of the first study were 971 children 3 months to 4 years of age who came to 1 of 10 emergency departments with acute gastroenteritis — watery diarrhea with or without vomiting. They received a 5 day course of either probiotic or placebo. The second study had 886 children of the same age group, treated for the same time period. The results of both studies showed no improvement in symptoms using the probiotic. This conclusion is pretty compelling because between them they studied 1,857 children. Of course who really knows what was going on in the children’s microbiome, but the bottom line is that adding “good bacteria” didn’t help clinically. Of course this is a different question than if probiotics are helpful for the diarrhea and gas that can be a side effect of antibiotic therapy. For those conditions I think they help. But for ordinary stomach flu, save your money. The articles were accompanied by an editorial, which concludes the same thing. It also gives a good general perspective on what is known about the conditions probiotics help.
If you’re interested in sampling the massive amount being written about probiotics and the microbiome you could try this or this. But beware: people who sell probiotics, and the internet if full of them, will always praise them to the skies for all manner of things. Such claims are often bizarre and violate common sense. It is unknown, for example, if probiotics help normal people who are not ill, or if they ward off intestinal complaints. That is the claim made by some of their more enthusiastic advocates. Or, as the TV commercials put it: “Maintain gut health.” Whatever that means.
Attention deficit hyperactivity disorder (ADHD) is a common diagnosis in children today, and is increasingly a diagnosis assigned to adults, too. You can read more about it at the National Institute of Mental Health site here, but the principal attributes are listed in the graphic above. ADHD is a real thing, despite some having some skeptics and a few outright denialists; differences in brain scans between persons who have it and who don’t show there is a definite physiological basis for the disorder. But in practice we don’t do brain scans. We base the diagnosis on a set of clinical observations of the child, often ones made by the child’s teachers. So there is some subjectivity baked into the diagnosis. Also, the symptoms of ADHD overlap what we would regard as normal childhood behavior so there is a large grey zone. The authors of this recent study in the New England Journal of Medicine tried to get at the problem of how developmental age, normal aspects of how old the child is, could affect the diagnosis. The title, “Attention deficit-hyperactivity disorder and month of school enrollment,” succinctly describes what they did.
It was a cleverly inspired study. The authors studied rates of ADHD diagnosis in children entering school according to birth month. They compared month of birth in places with a strict September 1 cutoff for school entry with places that don’t have that strict requirement. In the strict cutoff districts children born in September would be the oldest in their class because they have to wait until the next year; children born in August would be the youngest because they make the September 1 cutoff. Of course at this age a year represents 20% of a child’s entire lifetime — a significant chunk of time. They used a series of paired comparisons between adjacent months and found the difference between August and September birth months to be highly significant: children born in August were far more likely to be given a diagnosis of ADHD. These data are shown in their figure below.
So it appears those earlier months are crucial. The difference was substantial: the youngest children had much higher chance of being given an ADHD diagnosis than those who were 11 months older. No other comparison of successive months showed any significant difference. Of note, these differences were not observed in school districts with a more elastic start date. In those places there was some smearing together of the ages, likely blunting the effect.
The authors’ conclusion, which I think is likely to be correct, is that the teachers were looking at average behavior in the entire class. The children born in August are nearly a full year less developed emotionally than are the children born in September and were more likely to exhibit behaviors suggestive of ADHD. The bottom line to me is that one should be careful assigning the diagnosis of ADHD to young children just entering school. It appears we need to give them all some time to grow up.
Children are relatively healthy overall. Although 25% of the American population is under the age of 19, only 2% of annual deaths occur in this age group. There was a time when the contributions of diseases to pediatric death rates were much higher. Declines in deaths from infectious disease or cancer, the result of early diagnosis, vaccinations, antibiotics, and medical and surgical treatment, have given way to increases in deaths from injury-related causes, including motor vehicle crashes, firearm injuries, and the emerging problem of opioid overdoses. A recent study in the New England Journal of Medicine presented some highly disturbing statistics about how out of control are injuries to children from guns in America: in 2016, the latest year for which there are complete data, firearms caused 15% of all deaths in children 1 to 19 years of age — over 3,000 in total. Only motor vehicle accidents, at 20%, accounted for more. Cancer was the third leading cause, at 9%. Guns kill more children than cancer and heart disease combined.
The nature of gunshot deaths differed between adults and children. For adults, 62% of gunshot deaths were from suicides, 37% from homicides, and less than 2% from accidental causes. In contrast, among children 35% were suicides, 59% homicides, and 4% accidental. Think about that for a moment; nearly two-thirds of pediatric gunshot deaths in 2016 were homicides. The study doesn’t provide data on the deeper question this statistic begs an answer for: Who shot these children and why — were they deliberate murders or were many of the children simply caught in the crossfire of American gun violence? Not surprisingly, the proportion of accidental gunshot deaths in children was higher than it was in adults. We live in a country with more guns than people, and the news is full of accounts of small children finding loaded guns and accidentally shooting themselves or another child.
It’s also a well known fact having a gun in the house substantially increases the risk of a gunshot suicide. Adults are more likely to do this than adolescents, but note that a third of pediatric gunshot deaths were suicides; these cases are in adolescents with uncontrolled depression. Any mental health expert will tell you ready access to a violent weapon increases the likelihood a susceptible person will use it for self harm. Adolescents are immature reasoners and having a gun available is a risk.
Diving a little deeper into the data shows that, for children ages 1-4, drowning and motor vehicle accidents were common causes of fatal injuries. School age children, pre-adolescents, had the lowest death rates and for them cancer was the leading cause overall. It was among adolescents that firearm injuries became the most common, particularly suicides.
The paper offers some interesting and useful data about geographic distribution of the most common causes of pediatric deaths, dividing location into rural, suburban, and urban. Those data are shown in this graph:
An interesting observation is that rate of firearms deaths showed no geographic variability, unlike motor vehicle accidents. Even corrected for miles driven the increased death risk for rural children persisted. The authors speculated this could be related to longer response times of emergency services in rural areas and perhaps a few other things, such as less use of restraints. The overall risk for firearm death, though, was uniform between urban and rural children. Yet there were some differences within this classification. Urban children killed by guns were over twice as likely to be victims of homicide, whereas rural children were more likely to have committed suicide. There are many other useful comparisons worth your time reading, such as regarding gender, ethnic identification, and socioeconomic status.
I find this study to be quite disturbing, but it confirms what I’ve been sensing both from the news and from what pediatric intensivists are seeing in the PICU. There was an accompanying editorial to the research article that summarized things nicely. It began by pointing out the sad fact American children are 57% more likely to die by the age of 19 than children in any other developed country. I was unaware of that disparity. The author highlighted the role guns play in this difference; in other developed countries firearm injuries cause only a tiny number of pediatric deaths, orders of magnitude less than in America, land of many guns. He ends his editorial with a poignant plea:
“We are living in a divisive era in which there are few areas of consensus and agreement. Perhaps one of the few core beliefs that all can agree on is that deaths in childhood and adolescence are tragedies that we must find ways to prevent. Shouldn’t a child in the United States have the same chance to grow up as a child in Germany or Spain or Canada? We ought to be able to agree that in a country with America’s wealth and resources, children should have the opportunity to live, play, and grow to become adults.”
Yes. American children should have that opportunity.
I spent my early and mid-career years working in a pediatric intensive care unit at a large academic center. We did almost everything except for a few things esoteric at the time — small bowel transplants, a few kinds of experimental surgery. I’m now in my late career (but have no plans to quit anytime soon!) and work in a smaller PICU. I am frequently confronted with the issue of just what a smaller unit should be doing. Some of these questions are easy. For example, we don’t do kidney dialysis in children so any child who might need that gets sent to a larger, academic PICU. We also don’t do heart surgery in children, although we care for children before and after their surgical repairs done elsewhere. But you can easily see how this can get complicated, even murky, as we think about the vast array and spectrum of severity of childhood illness and injuries. For example, I frequently care for children with severe respiratory failure who need a mechanical ventilator. But our PICU does not (and should not) offer the most sophisticated form of respiratory support — extracorporeal membrane oxygenation (ECMO). Deciding when things have deteriorated to such an extent that a child might need ECMO, and hence transfer, is a total judgement call. We don’t want to transfer too early but we certainly don’t want to do it too late, when the child is much more unstable.
When PICUs began they were located in major academic medical centers. Now we have smaller units like mine scattered across the landscape. And “scattered” is the correct way to think about it because where you may find a PICU is a bit random. Essentially what happens is that a larger community hospital decides they want a PICU. I can tell you from personal observation this decision is often made with little detailed planning and without consideration of what having a PICU really means, what specific services you are going to offer or are compelled offer. Several organizations I know of just hired some pediatric intensivists (and never enough of them), bought some ventilators, stuck a PICU sign on the wall, and declared themselves open for business. Several organizations, including the American Academy of Pediatrics, have published guidelines of what a PICU should consist of, but it has no teeth and no one has decided exactly what services are appropriate. Besides, the guidelines are now a decade old. A very crude measure would simply use the metric of number of PICU beds and yearly patient census, but even that’s not done. There are some guidelines for specific procedures, such as liver transplantation, but on the whole it’s whatever people want to do. It’s pretty chaotic.
I’ve seen some bad things happen because of this Wild West approach to PICU practice. In densely populated areas such as the Northeast you find places were PICUs are sitting cheek by jowl and competing intensely with each other for patients. In contrast, in the West the nearest PICU may be hundreds of miles away and the referring physician has no choice at all. The issue, of course, is twofold: it is inefficient, and cruel to families, to transfer children to big PICUs when they could be appropriately cared for closer to home; yet it can be dangerous to keep children in smaller PICUs when they have or might develop problems that require a higher level of expertise. Of course this is not a problem unique to PICUs. It applies to other aspects of acute medical care. Critical care is a flash point for the question because there may not be time for a leisurely referral to a far away specialist. Decisions, sometimes simply based upon best guess, need to be made.
My own modest suggestion toward solving this problem is that every smaller PICU should have a formalized, agreed upon protocol for consultation and transfer of patients. In other words, there should be some type of formal regionalization for pediatric critical care. The PICU I work in is fortunate to have a tight relationship with a major children’s hospital. I can call at anytime on a direct number just to bounce ideas off another intensivist, ask for specific advice, or arrange transfer. I have many colleagues around the country who, when they wish for that sort of help, must go through layers of obstruction to get it. Sometimes when they want to transfer a patient to a bigger PICU they essentially need to “pitch and sell” the patient to the larger facility, who may even refuse the transfer for non-medical reasons. This is not the way to go. I think every PICU that doesn’t offer the complete range of critical care services should have some sort of arrangement with a larger unit. Right now most have only an informal, vague, “this is what we generally do” protocol. It needs to be better than that.
How Your Child Heals An Inside Look at Common Childhood Ailments
This book takes you on a tour of the inner workings of a child's body as it heals from injury, illness, and common diseases.
How To Talk To Your Child's Doctor A Handbook for Parents
"A great read for any parent. It really helps you get inside the mind of your child's doctor and figure out how best to communicate."
Your Critically Ill Child Life and Death Choices Parents Much Face
Personal stories of children and their families and how they and their doctors together learned the best way to understand and take care of each other.