During the 15 years that have passed since I began my pediatric training, I have been involved in the care of dying children. Thankfully, this is not a regular part of my practice, and I can remember each of those children. Most were kids who succumbed to chronic disease that had slowly yet inexorably overwhelmed them: leukemia, cystic fibrosis, Tay-Sachs disease.
Sometimes, when nothing more could be done medically, all that remained was to sit by the bedside with the family and embrace the child as he passed away.
Any child's death is tragic. Hardest to reconcile, though, are those deaths that might have been avoided. So why has the percentage of American parents refusing to vaccinate their children steadily risen over the last two decades (more than doubling between 1991-2004) despite the proven and unqualified success of childhood immunizations in reducing death and disability from infectious disease? According to one recent study on parental attitudes toward vaccinations, 13 percent of parents of children between the ages of 6 months and 6 years reported not vaccinating their children according to the recommended schedule. Nine percent refused some or all of the regular childhood immunizations for their children.
“Herd immunity” is a term that refers to the percentage of members of a certain population against a specific infectious agent needed to prevent the isolated incidence of infection from spreading broadly and turning into an epidemic. When one considers that the herd immunity threshold necessary to prevent the spread of measles, for example, is 92 to 94 percent, these findings are very worrisome. Not only does the refusal to vaccinate put the unimmunized at risk, it poses a serious threat to millions of others whose immune systems are compromised or deficient and unable to mount an adequate defense against infection.
Working in Haiti last year, I watched in horror as two teens died slow, agonizing deaths from diphtheria despite all of our efforts to save them. An infectious disease that is easily preventable through vaccination, diphtheria claimed thousands of lives annually in the United States prior to mass immunization, yet not a single U.S. case has been reported since 2003 for this very reason. While diphtheria could theoretically re-emerge as did cholera in Haiti after not having been reported there for more than half a century, being vaccinated would offer protection against it. However, most people alive today in the United States don't know anyone who has been sickened by diphtheria, much less died from it, and so it becomes possible to wishfully think that it is perhaps no worse than a bad cold, and certainly less fearsome than something read about online.
This trend will not surprise anyone working in pediatrics. More often than I'd ever thought possible, I meet parents of children referred to me for various reasons who have chosen not to vaccinate. When I ask why, they give ostensibly well-thought-out reasons. Chief among them are concerns about potential adverse effects, especially on development and behavior. Ever since Andrew Wakefield's notorious (and now discredited) paper was published in 1998 linking the MMR (measles, mumps, rubella) vaccine with autism, a widespread belief connecting the two stubbornly persists — even after the paper was retracted and Wakefield removed from the British Medical Register and barred from practicing medicine in that country.
In the U.K., annual MMR vaccination rates plummeted from 90 percent and greater in the years before the article was published to 79 percent in 2003, largely as a result of the publicity surrounding it. A dramatic increase in the number of measles cases seen annually in the U.K. followed, as did at least one fatality. Even in the United States in 2009, more than 26 percent of parents questioned in a study on attitudes toward vaccines expressed concern that vaccines can cause learning disabilities such as autism.
Other reasons parents give for not immunizing their children include a desire to let their child's immune system function "naturally" without artificial intervention; a reluctance to subject their child to something they aren't convinced is absolutely necessary; and concern that the multiple shots involved inflict too much discomfort and pain.
Let me state unequivocally that in the vast majority of cases the parents' decision not to immunize their children does not stem from callousness or indifference. There is no question that they love their kids as much as other parents do theirs. And if anything, they seem to have done more research on the topic than have most parents who conform to the recommended vaccination schedule.
The problem lies in how their research is conducted, and the sources on which the parents base their decision. A recent study on attitudes toward vaccines among American parents of children ages 6 years and younger found that 81.7 percent described their child's doctor or nurse as an important source of information that helped them reach a decision to vaccinate their kids. Not surprisingly, this number corresponded almost perfectly to the percentage of parents who were confident or very confident about the safety and importance of vaccines to their child's health. However, other information sources described as important in guiding that decision — such as family (47 percent), friends (23 percent), various media outlets (10.9 percent), and the Internet (9.9 percent) — can all provide partial, skewed, or even blatantly false information. I recently searched for “MMR vaccine autism” on Google, which yielded 567,000 results; two of the first 10 links on the first page supported the purported connection between the two.
Why do more than 18 percent of parents discount what their pediatrician has to say about vaccinations? That they do speaks volumes about the poor state of communication between patients and physicians and more broadly to the dysfunction in frameworks created expressly to support the relationship between patients and physicians. Increased regulatory and economic pressures have reduced face time with doctors during appointments. Reduced reimbursements translate into shorter visits, with more time spent on charting and paperwork. The ongoing erosion of trust in the medical establishment as a whole is also to blame, as frequent reports of dubious financial relationships between physicians, professional medical societies, and the pharmaceutical industry leave many questioning whether or not physicians can be trusted.
Unsure of what to do and whom to listen to, many seek answers to their questions elsewhere, or simply rely on their gut feeling, without speaking to those one would presume to be the most qualified to provide science-based guidance specifically tailored to the patient’s own values and cultural sensitivities.
"Oh yes, I remember that conversation," the mother of a previously unvaccinated 3-year-old told me recently. I had asked her at a follow-up visit whether she ever took her son to the pediatrician to start getting the shots I had urged six months earlier and which she steadfastly refused.
At that initial visit, I had taken time out from discussing the child's likely obstructive sleep apnea, the reason he had been referred to me, to talk with his parents about my concern about his not being immunized and to explain why I felt it was so important he be. She and her husband spoke at length about their fears that vaccinations might hinder his development, already noticeably delayed and a huge point of concern for them. Afterward, I worried whether I had been too harsh, but apparently I wasn’t.
Gazing down at her son whose head was resting in her lap at that follow-up, the mother gently brushed some stray wisps of hair away from his eyes, paused, and said: "He's already gotten three since we saw you last spring. We've decided to space them out, but it's going OK so far."
And then, looking back up at me: "Thank you."
If it hadn't been a two-way conversation based upon mutual respect, the message would not have resonated, and she and her husband would not have returned home and scheduled him to start receiving the missing vaccines, or, for that matter, ever come back to see me again.
As a pediatric subspecialist, I am very aware of how fortunate I am to have additional time to spend with my patients in clinic relative to my colleagues in primary care. It provides me with more opportunity to talk to my patients; listen to them; and try and understand what it is that ails and troubles them. The continued rise in health-care costs has caused many to focus their attention on finding ways of improving efficiency and reducing spending. These are important goals, to be sure, but they must not come at the expense of good communication between patients and physicians.
The transition to an electronic medical record, for example, is long overdue and already yielding improvements in patient care by allowing better information sharing and accessibility. But there are downsides to this as well. These include becoming easily distracted by the computer and the constant flow of new information, most of which is not directly related to the patient being seen; using more standardized checklists and fewer open-ended questions; and in general, relying more on data and less on what patients are telling us.
It is a given that physicians need to be vigilant about optimizing how we interact with patients in our own practices. As a professional community, however, we also need to make sure that the frameworks within which this interaction is meant to take place do not stifle it in the name of cost cutting.
Oliver Wendell Holmes wrote, "It is the province of knowledge to speak, and it is the privilege of wisdom to listen." This holds just as true today as it did more than a century ago, and is essential to guarantee not only the provision of high quality medical care, but also to ensure satisfaction for patients and physicians from the encounters.