Vaccine Refusal and Ethical Issues

All the families who bring their kids to see me know that, in general I’m a supporter of childhood vaccination. On balance, the risk to your child of a devastating or lethal disease with known and terrible effects seems to dominate the risk of vague eventual possibilities of problems that are either unproven or completely debunked. This post is not about why you should vaccinate your baby. Though you should.

I’m in a pretty privileged position. None of my patients comes to me just because my name was on the list from the insurance company. A parent picked me, researched me, got my name from a friend or coworker. Sometimes, I’m gratified to say, they get my name from a nurse in Labor and Delivery or from one of the lactation consultants or midwives. Some of my most difficult cases come to me on the recommendation of my pediatric colleagues who have practices of their own.

So it’s what is generally called a self-selecting group. They are here because they want to be here. When parents expecting their first baby come to interview me, many don’t know my views on vaccination. Perhaps it’s a result of being located here in Berkeley, but I don't get parents who have heard that vaccines are harmful, and want to learn my professional opinion. I get those who say they want me to be their child's doctor because they have read or heard about me, but have made up their minds about vaccines. I wonder what they really want from me. If they don't want my medical expertise, they why are they coming to me? How can I help them? I hope that I will always provide the best care I can, but I was not trained in and do not know how to provide some reduced level of care.

What prompted this observation is a comment I read on one of the informational websites for physicians. A very smart academic doctor pointed out that when we treat families who refuse vaccinations, we are really being asked to provide substandard care. He argued that if we send these families elsewhere, we have lost the opportunity—perhaps many opportunities—to educate them and help them appreciate the value of this intervention.

It makes sense to engage with these parents. Most of them are extremely well-educated and literate. I would love to give them literature on the subject, cite references, tell them my own horror stories to counter the ones they heard from the internet, the parent group, or in the check-out line at the local organic market. I'd love to tell them that one of the local Montessori schools was closed twice in the last year by the Public Health Department for being a center of major pertussis epidemics. But I get the sense that they are not interested in receiving this information, or perhaps just not from me.

The parents of every child make essential health decisions every day. They manage the diet, activity, and safety of their children. Hopefully, they balance protection with freedom, and find a way to let the child ride a bicycle but still make them wear a helmet. I don’t think I’m the only one who is shocked when driving in a parking lot and a toddler is walking along without holding a grown-up’s hand, while they walk far behind, texting. That’s not OK! I keep my mouth shut when this happens, but I mutter unflattering things as long as my car’s windows and doors are closed.

But I am required, as much by my own standards as those of my state licensing board, to practice at very least at the standard of care. If the kid needs an antibiotic, I prescribe an antibiotic. For this reason, doctors shouldn’t be complacent with the nonvaccinating parents. It seems like a strategy of engagement is a reasonable way to go.

But I'm scared. In the past couple of weeks, I saw in my office a pair of former preemie twins. They are now about 6 and 8 pounds or so, and just got out of the intensive care unit. They are over 2 months old. Having unvaccinated kids in my office would seem to put them at substantial incremental risk. What is my responsibility to them?

That's not the only reason I have problems seeing unvaccinated kids in my practice. I feel so strongly about the importance of a meaningful doctor-patient relationship that I'm unclear about my role in their care. If I prescribe a medication to help your child breathe but you don't give it to your child, and instead use what your homeopath recommends, why did you consult me in the first place? If HIB vaccine could save your baby's life (or brain) but you refuse it, how much trust do you really have in me, my judgment, my training? It's better to bring your child to an advisor you really trust, whose expertise you respect, who can provide the care you really want and value.

I have absolutely accomplished one of the goals I set out for myself when I started this practice. I have patients and families that I know and who respect my guidance. This is probably a logical point at which to note that this doesn’t mean slavish obedience! I expect my own doctors to give me their very best professional advice, and in return I promise them—though this is unspoken—that I will take it seriously and do the best I can. I haven’t always followed what they suggested. Occasionally, I thought they were wrong, or didn’t understand all the aspects to my situation or complaint. Most often I just couldn’t do what they wanted. I couldn’t afford it, couldn’t spare the time, couldn’t make it work for me in some important way. But it has never been because I thought they were stupid, uninformed, or malicious. It wouldn’t say good things about me if I continued to go to a doctor like that.

So if I recommend that you let me painfully inject into your baby something you believe to be poisonous, toxic, or unproven, or if by recommending this your belief is confirmed that I am little more than a meretricious shill for the Big Pharma cabal, why would you want me to see your child?

Sometimes, when the prospective parents are interviewing me but before they storm out of the office, the reason comes out. I’m not really going to be their baby’s doctor. I’m the safety net for the naturopath, homeopath, or chiropractor who will really be managing the baby’s care. Then, if something goes wrong, they can bring the baby to me.


So the first ethical problem I have with treating families that don’t vaccinate is the fundamental nature of their request. They have asked me, with their full consent, to provide substandard care. When asked about this, a physician said that it was like the family refused to use a car seat for the baby. They ask the pediatrician, however earnestly, ‘What’s the best way to hold the baby while driving?’ Not only isn’t there a good way to hold the baby, but it would be unethical to do the research which could tell us if holding one way is 100 times more potential lethal than using a car seat but holding a different way is only 92 times more potentially lethal than using a car seat.

This is a line from a common translation of the Hippocratic Oath: I will prescribe regimens  for the good of my patients according to my ability and my judgment and never do harm to anyone. There isn’t much about doing less than my ability because the helpless baby has parents with...issues.

But the second ethical problem is obvious. Though it doesn’t come up in Hippocrates, it’s a central tenet in medical ethics. Autonomy. The patient has the right to make decisions about themselves and their treatments. With children, it’s generally understood that this means that the parents get this autonomy. When exactly this ends, by the way, is unclear. Legally, kids who are 18 acquire most of the medical rights of adults. This is confused, of course, if mom and dad are still paying for the health insurance. And, varying state by state, teenagers of a certain age can ask for and receive contraception or contraception counseling. Sometimes psychological services. Babies...not so much. Our society makes an implicit assumption that a baby’s parents have the best interest of the child at heart. Luckily and almost always, that’s true. The parents who choose not to vaccinate aren’t trying to hurt their baby, they are trying to protect it in the best way they know. Given this complete and unquestionable lack of malice, don’t they deserve the autonomy we all expect?

And one more thing. If a parent came to my office obviously intoxicated, I wouldn't let them drive home. Maybe I’d call a taxi, maybe I’d drive them home or call someone to pick them up. I would intervene in some way to protect them, their child, the community of unsuspecting and unwarned drivers on the road who all agree to follow some shared set of rules that protect them all. I don't know how to resolve this ethical dilemma between their autonomy and my responsibility. When they decide not to vaccinate, it's not like holding the baby without a car seat—it’s loosening the straps a little bit in every baby's car seat. What's my obligation to them?

So I think there’s a third ethical problem: my responsibility as a physician in the community, perhaps as a citizen. It would be wrong to cry out, ‘Fire!’ if there was none. But do I have an obligation to cry out if I see one?

Patient Zero: The Hundred-Day Cough

Andy is about the healthiest 11-year-old in my practice.  If he didn’t keep bruising himself playing basketball, I don’t think he’d ever come to the office.  The cough he had was remarkable for another reason, too.  He wasn’t sick.  No fever, no trouble breathing.  No noisy breathing, not even a runny nose.  He didn’t even cough most of the time.  But every 5 or 10 minutes, he would cough and cough and not be able to stop for about 2 minutes.  During the 2 minutes, he had a lot of trouble getting a breath in between the coughs.  He only had this for a few days, however, so he got some cough medicine that helped to suppress the cough, and that helped him.  He was over the worst of it in a few days.

I’m fortunate that my patients and their families often recommend me to their friends.  So Andy’s best friend David was in the office the following week.  He had asthma, so his cough was just the latest in a series of exacerbations.  I increased his asthma medication, and he improved.  For a while.  Then he went back to coughing.  So he was back in the office, this time with what sounded like pneumonia.  He got antibiotics, and more asthma medication, and he improved.  For a while.  The cough he had was peculiar, and seemed to come in fits, just like Andy’s cough.  Sometimes, one of these coughing fits would stop right after he threw up.  For one visit, he and his mom brought along Sean, a friend from school.  Sean waited politely in my little waiting area.  After the first month of symptoms, two courses of antibiotics, tons of cough and asthma medicine which seemed less and less effective, I got lab tests.  He wasn’t thrilled about having to get a blood test.  On the way out of the office, he introduced me to Sean.  Sean was coughing, too.

  Though finding infective bacteria wasn’t likely after the antibiotics he received, I knew what I was looking for and ordered measurement of the antibodies in his blood against pertussis.  In the 19th century, it was sometimes called the Hundred Day Cough.  The kind that show a long-term memory in the immune system, IgG, would show a healthy response to his series of infant immunizations.  Another kind that I requested, IgM, would be evidence of an ongoing or very recent infection that his body was trying to fight off.  His pertussis IgM was very high.

After calling his parents to tell them that I had a diagnosis, my next call was to the office of Public Health.  Within 12 hours, they were mobilizing in one of the local middle schools.  David has an older brother in high school.  He was coughing, too.  Within 24 hours, they were at the high school, too.

Andy’s mom told me that she felt bad about him starting this growing number of cases.  It wasn’t anybody’s fault, I told her.  She knew about epidemics, and she called Andy Patient Zero.  Patient Zero is the very first case in an epidemic that can be identified.  All the other cases can be traced back to this one.

By Halloween, a couple of months had passed from the time that Andy first came to my office.  He wasn’t coughing any more; David’s older brother wasn’t coughing any more; even David wasn’t coughing any more.  I was at their house for a party on Halloween.  (I dressed up as a pediatrician who stayed late at the office. )  Andy’s friend Sean was there, coughing. 

I was introduced to Sean’s parents, who, in a friendly way, tried to explain that their decision not to have Sean vaccinated was just a personal choice, like being vegetarian or buying fair trade coffee.   Sean wasn’t my patient, and I left the conversation.

I pulled Andy’s mother aside and told her that he wasn’t Patient Zero.  Sean was. 

Given that unvaccinated children are 23 times more likely to get pertussis, it’s pretty likely that in my neighborhood, the kid that gets it first is probably unvaccinated.  David, who has asthma, really struggled with it and needed a lot of medication that he probably otherwise would have been able to avoid.  Sean too, I suspect, was suffering.  He had been coughing for about 2 months or more by Halloween.  In vaccinated kids, the mean duration of the worst cough is 29-39 days.  In the unvaccinated, 52-61 days.  That’s an average, so some will be longer and some shorter.  The incubation period for pertussis is 4-21 days.  Sean was the first to have the disease, and is probably spreading it even now, with every frequent cough.

Sean, I assume, and the 3 of my patients who got pertussis from him, will all be OK.  But when they come home from school, who gets it from them?  What about the grandparent with lung disease?  What if there’s a sibling getting chemotherapy?

Andy’s mother is pregnant.  When the newborn is home in a couple of months, will Sean come over to hang out with Andy and David?  How will she make decisions like this?  When I told her that it was nobody’s fault, I didn’t know what I know now.

Swine Flu Update November 4 2009

Sometimes our government does things really right.  I think the Centers for Disease Control [CDC], year in and year out, does a great job.  And they do it for the whole world.  (At least for them, for free.)  Before any of my patients go to exotic locales, or sometimes not so exotic ones, I will check their website for up-to-the-minute news of outbreaks or cautions.  Their very best feature is a real-time Traveler's Health section, where you can find what's going on disease-wise in any place on Earth, and if your next vacation leaves you exposed to Chikungunya Fever.

Feeling this way, from years of experience, has left me particularly confused about the current H1N1 vaccine situation.  I heard from our government just months ago that there would be available 130,000,000 doses of vaccine available.  They did a fine job of publicizing the epidemic, so that many of those who never got flu vaccine before are now asking for it. 

I have a long list of children whose parents want them to get the vaccine, and many of those children have complicating risk factors.  I haven't received even 1 dose so far.  In this area, Kaiser Permanente (presumably the largest organization ordering vaccine) got theirs a couple of weeks ago.  Some other counties have had it for a while, too.  Larger medical practices are getting deliveries.  Not me, not the small practices.  When--if--I get some in my office, will it be like the seasonal flu vaccine?  I ordered it last year, received a fraction of what I ordered, and can't get more.  There is no more, and many of my patients have had to do without. 

One of the things that's so confusing is the number of doses available.  In the 3 or 4 months since the 130 million number was being mentioned to every news outlet, a large proportion of those doses failed to materialize.  I've tried to find an authoritative link on this, but haven't been able to.  A lot of sources suggest 14 million, some say a little more than that, but much will only be available in 2010.  The CDC website says that as of October 30, 2009 16,870,000 doses have been shipped.  Where did it all go?  The manufacturing cycle for vaccines is a long one.  Batches are grown, purified, prepared.  If things were going slower than expected, were they going 90% slower?  How come the government didn't know or didn't publicize that or tell us what to do instead?  Are there manufacturing plants that have broken down?  Labor unrest?  All the reasons I can think of should have been known and followed intimately by the same people and institutions that seem to have been so vigilant (and generally right, by the way) about the upcoming, now ongoing, epidemic.

I'm faced with a problem.  If I don't get enough, who do I give it to?  I know who the most vulnerable patients are, and I will be ranking them.  It's not a list you want your kid to be on top of.  But it's a list you still might want your kid to be on.  Why do I have to make this kind of choice? 

I need to point out that I am not blaming anybody for this situation.  If it were possible to deliver all the promised doses, I'm confident it would be done.  But I do feel that we all should have known long before this.  The lack of information could have serious health effects.  Next year, there will be studies of the cost of the H1N1 epidemic.  The cost of treatment, hospitalization, interventions of all kind, doctor and ER visits will be added to lost wages and time spent staying home with the sick child.  But what won't be counted is how much might have been saved--even without the vaccine--if we had been able to plan a little better with better, more timely information.

With all the above said, here's some information available this morning, as a service to my patients and their families, and to the many readers of this blog everywhere.

Flu Vaccine Locator (AMAZING!), Nationwide USA.

 
Questions and Answers about the H1N1 vaccine.
Is it safe?
A guide to antiviral drugs for the flu.

What to do if you or somebody close to you gets the flu.
Pregnant women and this flu.
State of California Public Health link.
City of Berkeley flu link.
FAQ for parents about H1N1


For kids, adults, and probably free:
Alameda County H1N1 vaccine clinics.
Contra Costa County H1N1 vaccine clinics.

H1N1 Influenza—Swine Flu Update

When the H1N1 flu came to my office in April and May of 2009, I had been hearing a lot about it, but with few credible statistics. In a few weeks, I saw maybe a dozen kids and parents with the right symptoms to make the diagnosis. One or two actually had confirmed diagnoses with laboratory testing. I have a tiny practice, so that seemed like a lot at the time.

Perhaps it's obvious that everybody in Washington is expecting worse to come. The mini-epidemic last spring was relatively removed from typical winter conditions in most of the country, so if it returns in mid-winter, as the flu usually does, it might be worse.

In the winter, kids generally spend more time indoors with other kids, often playing actively or in close proximity to each other in school. That's a good way to spread germs. Even at home, that closeness favors the spread of contagious diseases. In the winter, the air is drier and our respiratory secretions are thicker and stickier. That, too, is kind of like flypaper for diseases.

There is another hand to this. So far, I haven't really read much about this particular influenza being more virulent than the regular influenza that comes around every season. That's not terribly reassuring in my line of work, since the regular old flu can be a serious problem for newborns, as well as for kids with a breathing condition like asthma. That's the good news.

The reason, I think, that there's so much worry is that it seems that nearly everybody who's exposed to this H1N1 flu gets sick. Think of what that could mean—you and your whole family all sick at once, your neighbors and friends sick, the pharmacist, and so on. It's not a pretty picture.

The nice folks at the CDC have said there will be a H1N1 vaccine available, probably in October or so. I don't know what the final recommendations will be for who will be the first priority of people to get it. At the moment, it’s recommended for all children and young adults, all pregnant women, and people with other risk factors. I'll get it if I can. There's a regular seasonal flu shot too—it's available now. It's worth a shot.

Note to my patients and their parents: if you want your child to have flu shots this season, please let me know ASAP. I might still be able to order them.

The Centers for Disease Control (CDC) is one branch of the government that works superbly. They are the most authoritative source on this planet for all news of epidemics and new diseases. There is no physician or expert who knows more than they do. All the major news organizations get their information from them, and you should too. The H1N1 Flu page is where you can find the best and most up-to-date information. It's updated at least once every couple of days. Don't be sold on something from the alarmist salesperson at the alternative-medicine pharmacy. Trust yourself and get the straight story from the CDC. They have no hidden agenda and aren't trying to sell you anything.