I’ve been involved in several boisterous Twitter debates about vaccines, at least to the extent that one can debate using snippets of 140 characters or less. I’ve also been a Super Moderator at a very large Internet message board (AbsoluteWrite) for many years and have seen my share of passionate vaccine debates there. I’ve been a pediatrician for over 30 years and trained in the subspecialty of pediatric infectious diseases before I went into critical care. So I think a lot about vaccines and have watched controversies about them come and go for a very long time. It’s been interesting. One very interesting aspect for me is trying to understand how parents think about the relative risk of medical treatments and procedures for their children. It’s different from how physicians think of risk, and I think this difference is key to understanding the continuing ferment over vaccinations. I’ve previously written about the risk of a vaccine injury (about 1 in a million at worst) compared to the risks of everyday life, but there is another aspect to the issue: in my experience parents are uniquely worried about vaccine risk in ways they are not about other medical procedures and treatments. A few examples illustrate my point.
Stevens-Johnson syndrome is a severe skin reaction to something, most commonly a medication. It varies in severity but can progress to a very bad condition known as toxic epidermal necrolysis. This is a life-threatening condition and often requires a prolonged stay in the intensive care unit. I have seen several life-threatening cases over the years. The drugs that can cause it are quite common ones. Many are antibiotics; sulfa drugs, for example, are well-known offenders. How common is this condition? There are about 300 cases per year in the USA. This makes it much more common than vaccine injury, yet nearly all parents think of antibiotics as safe drugs. On balance, they are — but they are not risk free.
Medications like antibiotics can cause other kinds of allergic reactions, which can be severe or life-threatening. A very conservative estimate is that about 0.01-0.05 % of all people — about 1-5 per 10,000 individuals — will have such a serious drug reaction in their lifetime. Yet parents accept prescriptions without worrying about that.
Another example is anesthesia. As part of my practice I anesthetize many children for procedures, such as MRI scans. The risk of doing this is low, but it is well above zero. The actual risk of death from an anesthetic is around 1 in 250-300,000 — about 3 times the risk of a serious vaccine reaction. There also may be neuro-developmental risks to young children who receive anesthetics. That risk is very low, too (there are many studies ongoing to define it), but it is not zero. Of course if a child needs emergency surgery the balance of risk versus benefit overwhelmingly favors using the anesthetic, but there are many other situations that are not so clear-cut. Yet virtually all parents willingly allow me anesthetize their child.
My point is that vaccine risk, compared with the risks of other medical interventions, causes particular concern among parents, and I am not sure why that is. However, it is not new. Since the introduction of the very first vaccine, Edward Jenner’s use of smallpox vaccine, people have been particularly suspicious of vaccines. (The name “vaccine” itself is derived from Jenner’s use of the vaccinia virus, the cowpox virus, as a protection against smallpox.) As noted in the essay linked above:
Although the time periods have changed, the emotions and deep-rooted beliefs—whether philosophical, political, or spiritual—that underlie vaccine opposition have remained relatively consistent since Edward Jenner introduced vaccination.
I suppose the notion of putting a foreign substance into a child’s body with the intention of provoking the body to react to it is philosophically distinct from giving a child a medication that is not intended to do that. But I would be very interested in what other people think makes vaccines unique.
“The Internet is full of information . . . and some of it is even true.”
Like many physicians, many of my patients’ families use Dr. Google to help them understand their children’s illnesses. Overall I think this is a good thing. After all, I blog about these things, and from the feedback I get, many parents appreciate what I and other physician-bloggers do. I also get a lot of requests about where to turn for reliable information. I’ve written about that before, where you can find some of my recommendations. One of my colleagues, Dr. David Tilstra, has drawn up a handy list of good websites, accompanied by a brief blurb about what each site has to offer. It’s a useful guide. The link is below.
Reliable Websites for Medical Information
Like all doctors these days, many of my patients’ families search the internet for medical information. Often the day after I’ve had a long discussion with a family they return with fresh questions they’ve obtained overnight from Dr. Google. Some of you reading this right now are likely doing that very thing. There’s an excellent recent discussion here about this brave new medical information age, what it means to doctors and patients.
For myself, I am always pleased when families do this. It provides an excellent starting point for continuing discussions about their child. It helps me a great deal in my communication with families. This is often because, even though I explain what I think is important, I not infrequently misjudge what parents really are wondering about. In addition, some parents are a bit inhibited (or intimidated) in discussions with doctors — an Internet search helps them formulate their questions based upon what they really want to know, and I can more easily give them that.
I think doctors should embrace this newest wrinkle in the doctor-patient relationship. For one thing, it’s a very useful conversation opener. I often ask parents if they’ve been looking for online information, if there’s anything I can do to help them find it, and then discuss it with them. For another thing, pointing patients to reliable websites gives them something they can return to in the future for continuing information.
Doctors can serve as a key interpretive filter for patients and families because, of course, the medical information on the Internet, though open to all, is not infrequently wrong. Or, if not wrong, it is not really applicable to my patient’s situation. And somebody’s blog rant should not be weighed equally against information found on a respected site.
There are many useful sites for parents seeking this kind of information, but here are a few I think are good. Properly used, the Internet empowers patients and parents; improperly used, it can confuse and frighten them. Either way, doctors shouldn’t ignore it. Our patients are using it all the time, so it is best for all if we help them do that in the best possible way.
Here’s a recent piece I wrote for an excellent site aimed at fathers — Smartman Daily.
Fifty years ago it was nearly always mothers who brought children to the doctor. Things are different now. A child’s father is as likely to be the one to make the trip (and put up with those long spells in the waiting room). Whichever parent brings the child in, chances are the visit requires taking time off from work. Insurance co-pays continue their relentless increase, but one of the biggest costs to families is a hidden one–your time. So here are five ways you can make the trip to the pediatrician more efficient and useful to you and your child. One or more of these might annoy your pediatrician, but don’t be dissuaded. You’re not being a pest–you’re being a good dad.
1. Ask the doctor to explain exactly what he is doing during the examination. If you’ve watched carefully as a doctor examines your child, you’ve probably noticed it’s not a random process. There is a method to it. We’re looking for specific things when we shine a light down the throat, feel the front of the neck, or push on sore bellies. These things are often not mysterious, and parents can learn about them, too. No, you shouldn’t be using a stethoscope to listen to your child’s chest or an otoscope to look into his ears, but there is a lot of practical information you can glean from understanding how a doctor’s physical examination proceeds and why. So don’t be afraid to ask the doctor to show you what he’s up to. If you do, you’ll get much better at describing your child’s problems. That will help speed things up at the next visit to the pediatrician-and reduce the risk that the doctor will overlook something important.
2. Insist that the doctor gives a precise and understandable explanation of his conclusions. Making a medical diagnosis is a mixture of science-based decisions, educated guesses, and occasionally just speculation. When the doctor tells you what she thinks, ask her why–and how solid her conclusion is. Pin her down. If you don’t understand what she is saying–if her answer is full of jargon, for example–ask her again. Have her draw a picture or two, if necessary. Ask the doctor to think out loud for you about her decision-making. If you do that over the course of several visits, and pay attention to the process, you can actually learn yourself how to make some simple medical decisions. I’m not suggesting you try to practice medicine on your child. But the more you know about how doctors decide things, the more productive your doctor visits will be. You might even avoid a visit or two in the future.
3. Take notes during the visit, and review them with your doctor. We doctors take notes when we talk to parents, so why shouldn’t you take notes when you talk to them? It’s the best way to avoid misunderstanding. In particular, make sure you have the correct spelling of whatever condition or disorder the doctor describes to you. If he uses anatomical terms, make him spell those, too. You can then use this information to do a little research yourself afterward.
4. Tell the doctor you’re going to do some research of your own. Some doctors get annoyed when parents come to the appointment with a packet of information they found on the Internet. It’s true that there is a lot of misinformation out there-and this is precisely why a savvy parent should quiz the doctor about what Internet resources she recommends. Many doctors these days have handouts for parents suggesting where to look, but many also do not. So ask, then go yourself and learn. Sites maintained by children’s hospitals or organizations, such as the American Academy of Pediatrics or the American Academy of Family Physicians are examples of reliable sites.
5. Ask the doctor about e-mailing one another. Many doctors have embraced the benefits of electronic medicine. E-mail can be a huge time-saver both for you and for your doctor. From my perspective, e-mail is better than getting constant telephone calls that interrupt whatever I’m doing. If your doctor seems resistant to emailing with you, press him a little. You probably can save yourself the time and expense of a few office visits.
Doing any or all of these things may annoy your pediatrician. Yet medical practice in general needs some new ways of doing things, since at least part of the reason we are in the middle of so much health care turmoil stems from the traditional ways medicine is practiced. The way to think of your visit to the doctor is a team meeting of equal partners in your child’s care. Acting on these suggestions means that you are doing your part to educate your fellow team member, your doctor. Good doctors learn from parents all the time!