I recently had an experience of the sort any experienced physician has now and then. One of the doctors in the emergency department asked me to come down and help evaluate a small boy with breathing difficulties. The child indeed was breathing hard, although he was holding his own for the moment with the help of some extra oxygen. What was striking about the boy’s examination was that when I put my stethoscope to the child’s chest I couldn’t hear any air at all going into his left lung — none at all.

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.

There are about 400 PICUs in the United States. It is hard to know the exact number because, although several organizations have proposed standards, these facilities are self-identified. So a hospital is free to designate a place as a PICU and paint the letters on the door to it. How can you tell if your child is in a good one? Of course you can use the general reputation of a hospital to decide — a recognized children’s hospital will most likely have a good one — but are there any reliable measures of quality?

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.

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

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.

The last few posts have been about medical ethics, both practical issues and more abstract ones. A recent symposium in The New England Journal of Medicine is an excellent place for you to read and ponder a major ethical conundrum. The symposium consists of three editorials (here, here, and here), as well as a live round table discussion, which you can watch here. The editorials are brief, easy to read for non-physicians, and the video of the round table lasts 17 minutes. The issue at hand is what is called cardiac donation after cardiac death.

I’ve written before about how the demand for organs to transplant far exceeds the supply of available organs, and thus many patients waiting on a transplant list will die on a transplant list, still waiting. This is particularly the case for a small subgroup of those patients — very small children needing heart transplants. The symposium is centered around a scientific report in the same issue of the journal, in which three infants received successful heart transplants. To understand the ethical issue you need to know how organ transplantation is done.

The ethical cornerstone of the practice seems simple and obvious — an organ donor must be dead before he can donate organs. But that means we must all agree upon what “dead” is. Until several decades ago the standard definition of death was irreversible cessation of cardiac function — the heart stops and cannot be restarted. Since then we have added a definition of brain death to that — irreversible cessation of all brain function, including what we call the brain stem. Nearly all organ donors are declared dead by brain death criteria.

The infants in this case series, however, did not receive their new hearts from brain-dead persons. All three organ donors were devastated and dying, but they did not fulfill brain death criteria. Their families had made the heart-wrenching decision to withdraw life-support, a perfectly ethical decision. Once that was decided, the donors’ hearts stopped, were removed three minutes later for one patient and seventy-five seconds later for the other two, and then transplanted in the needy infants. The problem some see with this protocol is that a heart that is removed from one person and then placed in another, and which restarts there, has clearly not lost “irreversible function.”

The core issue, I think, is that when we die the organs within us die in stages, not all at once. At what point are we dead? Any line we draw is arbitrary until all our organs and the cells within them are dead. By that time, of course, they are useless to save anyone else’s life by transplantation. One of the writers in the symposium believes donation of a heart by this protocol is unethical because, by definition, the donor isn’t dead. Another writer points out the historical arbitrariness of our definition of the precise moment of death.

For myself, I participate in donation after cardiac death protocols and believe them to be ethical. But I also acknowledge the complexity of the issue. I highly recommend you watch the video round table. If you are interested in really delving into how complicated problems in medical ethics are worked out, I also recommend the brief articles. It is an emotional and difficult topic, but I know of no better way to illustrate for you how the PICU can highlight some of our most difficult ethical issues.