Communication by e-mail is now routine for many people, including nearly all business people. E-mail would seem to be a perfect way for harried doctors to save time by using it to communicate with their often equally busy patients, yet this article in USA Today discusses why this has not happened to any meaningful extent. One concern is patient confidentiality. Another is an undesirable change in the doctor-patient relationship. But perhaps the most relevant reason is mind-set; most doctors I know believe a face-to-face encounter with patients and families is the best way to communicate and avoid misunderstanding. I can see ways e-mail could augment personal discussion, but I would want to make sure it did not replace it. Would you use the ability to communicate with your or your child’s doctor by e-mail?

Update
Here is an interesting update on the question. It appeared in the October, 2007, issue of Pediatrics, the official journal of the American Academy of Pediatrics. Unfortunately, the article can only be read by subscribers to the journal, but the upshot was that, of 328 families offered the opportunity to communicate with the doctor by e-mail, 306 accepted. A survey of these families showed high satisfaction with the system, and doctors spent less time on the telephone.

A hundred years ago virtually all decisions about how to care for sick children came from the child’s family. By mid-century, medical professionals—doctors and nurses—were making more and more of these decisions. Families were increasingly excluded from key decision-making. By the time I began my pediatric training in 1978, families were even excluded from the pediatric intensive care unit much of the time by restricted visiting hours.

Fortunately, the pendulum is swinging back with the increasing acceptance of what is called family-centered care. You can read more about it here and here. Pediatric intensive care physicians these days are encouraged to involve the sick child’s parents in everything, even including the parents in the formal bedside teaching rounds that are the hallmark of big university hospitals. I have become accustomed to doing all manner of procedures, from intravenous line starts to cardiopulmonary resuscitation (CPR), with the parents standing by.

Nearly all parents think this is a good thing. Many have told me their imaginings of what I am doing to their child is far more stressful to them than actually watching me do it. Some physicians are uncomfortable with this notion, since it lays bare some of our ignorance and fumbling. But we need to get used to it, both because it is the wave of the future and because it is the right thing to do.

We have yet another teenager in our PICU with a severe brain injury from driving without wearing a seatbelt. You can read some statistics here, but there is no statistic that has the impact of seeing a brain-injured child lying comatose on a PICU bed. I see this far too often.

Motor vehicle accidents are the number one cause of death for adolescents aged 16-20. Although they account for only 6% of drivers, teenagers account for 14% of fatal crashes. The crash rate among 16-year-old drivers is especially high — nine times that of the general population. Although seat belt use among the general population has increased steadily, adolescents, especially boys, are among the least likely to use them. If you are the parent of a teenager, do whatever it takes to get them to buckle up.

Jerome Groopman, Harvard professor and staff writer for The New Yorker, has written a new book called How Doctors Think. His point is that, among other things, the way doctors make decisions is filtered through our past experiences, what we have seen lately, and what we already know the most about. Heuristics, the formal discipline of problem-solving, is not taught to medical students, at least not widely. Most of us learn, as I did, by the apprenticeship system – watching more experienced doctors and how they operate. This can lead to problems.

One particular problem Groopman points out is that diagnostic decisions have a kind of momentum; once a child is placed in a particular disease category, a diagnostic box, we filter everything through our assumption the diagnosis is correct. I see this happen now and then. We are tempted to ignore any data that contradicts what we “know” to be the diagnosis. Doctors even have a saying to justify this: when something seems strange, we are taught “it’s more likely to be an uncommon manifestation of a common thing than it is to be an uncommon thing.” Perhaps so, but uncommon things still happen.

The Blogosphere has seemingly millions of blogs, and many of these touch on important aspects of children’s health care. However, I found none about the needs of very sick children and their families. Well, now there is one – this one. My goal is to make a small room in the huge, many-roomed mansion that is the blogosphere where we who want to talk about these things can meet. I’ll be here at least every week, and I hope others – parents, grandparents, medical professionals – will come by and add their voices, too. Be as controversial as you like – medical politics, health care funding, end-of-life issues – but please respect each other’s opinions.

An important disclaimer. What the blog cannot be, of course, is a source for specific medical advice about your child. That only occurs in the setting of a formal physician-patient relationship, which this blog is not. So you should never take what I say as substituting for that relationship between you and your child’s doctor.

Introductions over, let me begin with my definition of what people like me are, which is akin to old-time general practitioners. That notion may sound strange to anyone who would see me on a typical day in the PICU surrounded by high-tech gizmos, but it is true: physicians who run PICUs are like general practitioners for the very sick child because we look after the whole child, not just one organ or another. Or at least we should do that. The paradox of the ICU is that low-tech humanistic skills are the key to success in medicine’s highest-tech place.